User Tag List

Likes Likes:  37
Page 1 of 2 12 LastLast
Results 1 to 10 of 17

Thread: Your experience with the healthcare system when you first began suffering from GPA?

  1. #1
    Join Date
    Oct 2017
    Posts
    15
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Question Your experience with the healthcare system when you first began suffering from GPA?

    This is more a post about the healthcare system and how it is trained to react to GPA and less about the disease itself. Each of us has that one doctor who saved our life and/or the family members who fought by our side to advocate for us and help us be heard. I want to hear about everyone's experience with the healthcare system when they first started experiencing the effects of GPA, because I have the feeling that I'm not the only one with a story like this and I think that something should definitely be done in the way of awareness of this disease so that more people don't have to suffer multiple tragedies in order to get the care they need and deserve.

    Yes, this disease is rare but honestly... it isn't as difficult to diagnose as everyone says it is. The difficult part is actually getting the doctor's attention, because it seems like unless it's as subtle as a broken bone all it's going to get is a "take 2 and call me in the morning."

    I'm going to share my experience, but I'd really like to hear everyone else's (I know you've probably all ran through this a hundred times over).

    I had my first GPA flare up a year ago in the Summer of 2016. It began as severe sinus pain that would radiate into my teeth, cheeks, and eyes. I was always tired and sweaty. I'm underplaying how severe the pain was because I've partially blacked it out. It was one of the worst experiences of my life. I remember driving home from work in complete tears from the pain, having to stop for a hot decaf coffee because the heat was sort of helping with the tooth pain. I remember using heating pads all night every night even though they didn't really help with the pain... they just felt good and provided a little bit of comfort.

    I met with my primary care and explained it all to her, she tried me on azithromycin then augmentin, then eventually referred me to an ENT. It would be 3 months until I could meet with him. He assured me he could cure my infection but that it would just come back until I had an expensive septoplasty/turbinectomy.

    Between my doctor and him they tried me on azithromycin, then augmentin, then levofloxacin, then ciprofloxacin, and the only thing that helped was the two rounds of prednisone I was given (which everything would come back worse when they ran out). They didn't even find any bacteria in my sinuses and assumed it was just "some resistant staph infection." Now that I've met an actual ENT, I'm pretty sure the one I met a year ago is just a glorified plastic surgeon. He had more information on botox injections in his office than he did on actual medicine. It would be 2 more months before my surgery.

    At one point I complained to my doctor about severe plural pain over my heart. She just sort of went "huh, it must just be a thing. Let me know if it doesn't go away." It went away a few days later but I now have a mysterious soft tissue mass where it happened.

    So for 5 months I had to "live" like that. It took all the energy I had to just make it through work (and I worked a desk job that involved minimal human interaction). I couldn't care for myself or my daughter (my wife and I were separated at the time with 50/50 custody and she'd have to watch our daughter almost every day because I just couldn't stay conscious). I'd come home and immediately sleep. All I could really do for 5 months was sleep except for the two times I had prednisone. I actually went out and ran a 5k during the 2nd round of prednisone, it was such a bitter-sweet relief because I wanted to believe it would stay but I knew it would just be worse when it wore off.

    Something happened with the surgery that miraculously sent me into remission because I did feel better.

    Fast forward to about a month ago (September 8th, 2017). My wife and I are together again. I woke up with extreme plural back pain, but I assumed it was just back pain and bought a new pillow. The next day I woke up feeling like I had over-trained at the gym and had to call into work because I thought I was coming down with something and wanted to rest it off before it got too bad (it's kind of sad looking back and remembering that moment of hope).

    Over the next week I started to feel like I was coming down with a cold. Then my joints started aching at night, I would sweat and lose my breath from doing superficial things like putting on my socks or folding laundry, I would become sweaty and feverish over trivial non-physical things (like having to solve a difficult problem at work), I was always tired and couldn't sleep throughout the night at all, constantly waking up soaking wet and hot, aching all over. It began to feel like the flu.

    I tried to see my primary doctor but the office told me she dropped me over an unpaid $70 bill from a year ago. I tried finding another doctor but they told me it would be a month before I could be seen, so I had to go to urgent care. I explained everything to urgent care and she gave me some azithromycin and told me to come back if I didn't feel better within 3 days.

    After a week it only got worse. All the old severe sinus pain came back and there was a bloody mess coming out of my nose 24/7. I went back to urgent care and explained everything to a different nurse's assistant exactly as it was. I was in severe 8-10 pain all day every day. I had to be very insistent that something was very wrong. She prescribed me some augmentin but I begged her to give me prednisone. She rolled her eyes and said "fine, I'll give you a SMALL dose" like I was just some asshole who was lying to her about my symptoms and was trying to hunt for drugs.

    She didn't really believe me because the stuff coming out of my nose was brown/bloody, not yellow/green. She kept asking me if I had a cough and I had to explain that I don't know because my back hurts too bad to cough so when I feel like I have to I just clear my throat. That sneezing feels like being blasted with a shotgun and it's even too painful to blow my nose. Of course I appear perfectly calm while I'm explaining this to her because this is pain that I've become acclimated to, having to live with it 24/7 for the past few weeks. Like how a slowly boiled frog won't jump out of the pot.

    "It feels like ice picks are being driven through my eyes and someone's punching me in the nose and teeth all day and that merely breathing agitates a knife that's stabbed in my back, I'm always either on one extreme of being so exhausted I can't stay awake and so sweaty and hot that I can't stay asleep, my knees and ankles hurt so bad I can barely walk up stairs, taking a shower makes me sweat for an hour and putting my socks on makes me run out of breath. I've missed over a week of work in the past few weeks, and everyone's really scared for me. Even the top of my head hurts. Every hair on my head feels like it's on fire. I would not be here if it was not really, really bad." was about as descriptive as I could be but I'm pretty-sure she thought I was lying to try and get some pain pills. She diagnosed me with a sinus infection and told me to call an ENT.

    The prednisone was the eye of the storm. I was still treating this like a sinus infection so I did my best to try and clean it out while I had a window of opportunity (3x saline rinse every day with a sinupulse, steam hood at night, manuka honey rinse and tea tree oil diffusion to try and kill the "staph infection"). The manuka honey actually healed the scabbing and bleeding (what a miracle) but my sinuses were now so raw and enflamed that it felt like severe allergies. I thought I had healed my nose and that the over-rinsing was doing more harm than good in terms of protecting my sinuses so I stopped. Within a day the bleeding started again.

    The pain was coming from my septum, not my sinuses. It was just radiating to everything in my face. Throughout all of this I'm close to overdose levels of ibuprofen and acetaminophen, which were doing almost nothing.

    After the prednisone was gone the back pain came back with a vengeance. A few days later the back pain became chest pain and was spreading to my shoulder. I was sitting at my desk at work running out of breath and decided I had to go to the ER.

    I went back to urgent care with the intent of getting an x-ray (to save time and money) and using that to segue into the ER. I saw the same woman as before, explained everything to her before and she basically told me there was nothing she could do. I told her I needed an x-ray and she clapped her folder shut, perked up and smiled, and said "ok, sit tight."

    45 minutes later she returned pale as a ghost, explaining that they found multiple soft tissues in my lungs and that I would need to go to the ER for a CT scan. I honestly wasn't surprised, I was just disappointed. I felt so betrayed and forsaken and sad for my family having to watch me go through this. She even suggested I take an ambulance and I had to look her in the eyes and tell her that I drove myself from an hour away and have been living like this for the past month, that I would drive myself.

    A week ago she told me not to use urgent care for things like this and told me to get a doctor.

    I was in the ER with my parents as my wife was home with our daughter, we had to tell her that I had to work late because we didn't want to scare her. The PA in the ER didn't even look at my x-ray and tried telling me that too many doctors over-prescribe CT scans and that he wasn't going to give me one. We all just looked at each other then looked at him and told him we already have an x-ray... that's why we were here. His face went red and he left the room. I had a CT scan not too long afterwards.

    He set me up with a pulmonologist in town and I finally got some actual pain medication and a real dose of prednisone. I called the next day for an appointment and was told they wouldn't see me because I wasn't referred by a primary care doctor. I can only assume my family called them screaming in tears because I was given an appointment the next day.

    The day before I was told I wouldn't be able to meet with the pulmonologist for another 10 weeks.

    I met with a pulmonologist who listened to me for 10 minutes and actually believed me. That's all it took. He told me he thinks I may have a disease called granulomatosis with polyangiitis and that I should go get some lunch with my family, come back for bloodwork. This doctor saved my life that day and spent every day of the next week kicking through every obstacle that the healthcare system was trying to put in my way just so I could get some attention from doctors. He set me up to meet with my new primary care doctor that day.

    I was told I wouldn't be able to even meet my primary care doctor until next week and he got me in within an hour.

    He referred me to a medical university. Their intake nurse turned me away saying that I "didn't have enough" to see a pulmonologist must less a rheumatologist and she set me up for an appointment a month away. My pulmonologist was furious... livid. He told me to go to the ER and told me what to say to them.

    Well, the next morning I woke up with 10 pain in my eyes feeling like they were being seared out of my skull. My wife drove me to the medical university ER and we waited. After 2 CT scans a PA asked us "what we hoped to accomplish by visiting the ER today." I said "I'd like to meet with a pulmonologist today." He told us that would be impossible.

    A few hours later I was admitted for inpatient. A few hours later I had met with my rheumatologist, his fellow, multiple attending doctors, students, staff, and the next morning met with two teams of pulmonologists. Shortly afterwards I was diagnosed with GPA.

    The day before I was told I wouldn't be able to meet with a doctor at the hospital for another month.

    A month ago I was told I had a cold.

    How many people feel sick as hell for weeks and take that appointment 10 weeks from now but don't actually get seen by anybody until they wake up one morning with kidney failure? Or blurred vision, or hearing loss, or stabbing pains in their gut, or coughing up blood? Have to have kidney transplants, plasma transplants, bone marrow biopsies, chunks of their lungs cut out, their noses collapse, their vision disappear, their intestines removed?

    Is this because of (a) complete absence of awareness of GPA or (b) complete absence of compassion in the healthcare system? Because doctors and nurses either (a) don't know or (b) don't care about the warning signs?

    If I didn't have that one doctor to listen to me, believe me, advocate for me, and knock down every administrative roadblock I encountered I would probably be dead or close to it. If I didn't have family members to fight by my side and speak up for me I would probably be dead or close to it.

    Based on my experienced (I know this isn't everybody's experience), GPA only seems so deadly because of all the hurdles and roadblocks that the healthcare system puts in its way to actually get attention, diagnosis, and treatment before it has a chance to ravage people's bodies.

    Is this a common occurrence? I'm really curious if anyone else suffered because of inaction on the part of hospitals, clinics, and healthcare staff.
    Last edited by howard; 10-15-2017 at 03:13 PM.

  2. Likes Alysia, drz, bobjannj, Marius, Jaha liked this post
  3. #2
    Join Date
    Oct 2017
    Posts
    6
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Your experience with the healthcare system when you first began suffering from GP

    It makes me furious seeing the above post.
    It’s just all that my husband experienced but there is so much more. Most of the phone calls and discussions pushing these people to act fast with appointments, submitting of meds in the hospital, specialist appointments, and just hearing the lack of compassion in these people’s voices. Maybe the staff are over worked and there is a policy, or state regulation (meds), or whatever but every decision they make, is my husbands life. We found amazing doctors: a wonderful pulmonologist, ENT, and a rheumatologist. I have no doubt they will save Howards Life. What scares the shit out of me is the administration who follows through with the paperwork, discharge, plan of action the doctor made to be arranged. I will never have howard discharged again without making sure the pain meds are ordered while inpatient. And I will read each detail looking to find an error because once your discharged, it is nearly impossible. Not to mention the pharmacy techs, registeration, the nurses who don’t care or don’t have the experience they need. It’s not all about science and research either, when my husband has been through 10 wrong blood work pokes, his veins blow, both his arms are black and blue and they can’t find a heating pad in the hospital, so they put hot towels and don’t come back and check in so howard wakes up with cold towels uncomfortable on him. I feel so much sympathy for people who don’t have family by them. The health care system should be There for people that are sick. It is a very dark disease and I want people to fight for the care they need until something changes. I would love to help get awareness for GPA.

    Would love to hear any stories on advocating for your loved one or yourself . Together we will get through this!

  4. Likes Alysia, bobjannj, Jaha liked this post
  5. #3
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,370
    Post Thanks / Like
    Mentioned
    20 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Your experience with the healthcare system when you first began suffering from GP

    In stark contrast to Howard and Amy’s stories, my experience with the healthcare system has been very good. That said, there are two factors that have granted me such good care. First, my wife and I have excellent health insurance via Medicare and a PPO supplement. It’s expensive at about $9,000 a year, but it has covered damn near everything. Second, we are blessed to live within convenient driving distance to two major teaching hospitals (Cleveland Clinic and Ohio State) where I was quickly diagnosed and continue to receive excellent on going care.

    When I have had issues with contacting a doctor, I have found that persistence pays. Both hospitals have MyChart which allows easy communications for non-urgent questions, lab results, prescription reauthorizations, and routine appointments. When I call the office, it’s generally with an urgent concern, and I tell the “gatekeeper” exactly what’s going on — symptoms and vital signs. I usually get a call back within 24 hours.

    My wife and I have learned a lot about dealing with doctors. We find that being direct while maintaining a pleasant demeanor towards both doctors and support staff goes a long way toward getting our needs met. We also make sure we don’t leave the doctor’s presence until we fully understand next steps and who is to take them. When I told my PCP’s nurse that I felt “like shit” during my first flare, the relationship we had built got me in to see him right away.

    Hope my experience is helpful to others.
    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

  6. Likes Dirty Don, seied, Alysia, drz, bobjannj, Jaha liked this post
  7. #4
    Join Date
    Nov 2014
    Location
    Central Pennsylvania
    Posts
    199
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Your experience with the healthcare system when you first began suffering from GP

    I was 16. I had a blood shot eye. Eye dr did short round of pred. Sinus infections. Dr did several rounds of antibiotics. Joint pain that landed me in the er 2 times. First dr said its growing pains. Next dr literally took my mom out in the hall n told her i was suffering from phychotic something or other. Meaning this pain was make believe, and only in my head. When i started vomiting blood after 6 months from initial symptoms my dr sent me to an AMAZING rhuemy who yes,most definetly saved my life. I dont actually blame the drs. I think they deal with alot of ppl who are seeking pain meds and i think it has blurred their vision. I dont think they know when its real and when its not. I dont know, just my idea.

  8. Likes Alysia, drz, bobjannj, Jaha liked this post
  9. #5
    Join Date
    Sep 2017
    Location
    Frederick, MD, USA
    Posts
    5
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Your experience with the healthcare system when you first began suffering from GP

    Your story resonated with me a great deal. Especially:

    Quote Originally Posted by howard View Post
    It began as severe sinus pain that would radiate into my teeth, cheeks, and eyes. I was always tired and sweaty. I'm underplaying how severe the pain was because I've partially blacked it out. It was one of the worst experiences of my life. I remember driving home from work in complete tears from the pain, having to stop for a hot decaf coffee because the heat was sort of helping with the tooth pain. I remember using heating pads all night every night even though they didn't really help with the pain... they just felt good and provided a little bit of comfort...So for 5 months I had to "live" like that. It took all the energy I had to just make it through work...I couldn't care for myself...I'd come home and immediately sleep...
    And I particularly agree with:

    Quote Originally Posted by howard View Post
    it isn't as difficult to diagnose as everyone says it is. The difficult part is actually getting the doctor's attention, because it seems like unless it's as subtle as a broken bone all it's going to get is a "take 2 and call me in the morning."
    Doctors I worked with initially had no experience with GPA, were hesitant, and unyielding when a patient is withering away before their eyes.

    Like you and many others, I struggled with getting responsive and timely help from medical professionals. I easily came to peace with how GPA is difficult to diagnosis and the limited experience of professionals with it. I’ve always been a relatively healthy person and inexperienced with the US healthcare system and what I found especially frustrating was the inability of doctors to listen to me and at a bare minimum, outwardly show me that I was heard. Every doctor I worked with prior to landing in the ER for the second time when I was ultimately diagnosed, always gave me the impression that they knew everything and were incredulous at my inquiring further and displaying a natural curiosity. At times I was physically struggling to move, a normally healthy 32 year old male, and I felt as they couldn’t see it. It maddened me beyond belief.

    At the onset of symptoms I sought the assistance of an urgent care clinic and after a round of antibiotics was then was referred to my PCP. My PCP thought it was sinus related and prescribed more antibiotics (azithromycin, augmentin) and after a month referred me to an ENT. I had likely by this point used the healthcare system more than I had in the previous ten years of living, so I trusted their recommendations. My experience stalled with the ENT referral. After several rounds of levofloxacin, pain medication, prednisone, and a minor procedure to relieve the fluid in my ears, I was four months in with this doctor before he finally referred me elsewhere but by then the my symptoms dramatically worsened. I was bewildered by this doctor’s hesitation. I’d be in tears at times or physically struggling only to be told by the PA that the doctor “doesn’t have anything else to offer you”. It was at my suggestion that I was referred to an allergist. It was at my prodding that labs were drawn. When I asked for the umpteenth time for imaging, this doctor referred me to an infectious disease doctor but that experience with that doctor was even worse. The ID was seemingly unwilling to listen to me, was resistant to further testing choosing to repeat what had been performed already. Again, it required multiple requests before any advanced testing that ultimately lead to addressing some of my symptoms. Still though, this doctor lacked any experience with this disease and it was never one of the possibilities in his view. After many months he seemed honestly perplexed but upon my asking what any of his colleagues thought (this was an ID practice), I was rebuffed by “Why would I ask them? You’re my patient”. Now that I’ve experienced this elusive disease and knowing that there are other diseases just as mysterious at first, it’s utterly bizarre and disappointing to me that many doctors don’t exhaust every avenue to determine a cause and seem to possess an overly confident attitude.

    I’ll also say that I work in a customer service focused profession that requires years of schooling and certification and granted that this is all personal and extremely subjective, I was at times appalled by what seemed to be an epidemic of callousness and extreme lack of empathy in the healthcare profession. I rarely felt heard, never felt cared for, and often felt dismissed.

    I would add to all this that I don’t know how anyone deals with any severe illness without the help of loved ones and adequate health insurance.

    Going through six months of misdiagnoses, emotional extremes, constant self doubt, in addition to the extreme symptoms, all require that someone else be in the room with you when you are working with a doctor. There were times I was physically in the room but mentally somewhere else, attempting to process everything within the fleeting moment that I actually saw the doctor (that’s another thing: for all the money I’m spending, is it too much to ask that a doctor give me more than five minutes and make me genuinely feel like a patient?) and I needed someone else to ask the questions, take the notes. My sexuality presented a stumbling block. I’m gay and had been with my partner for twelve years by the time I was diagnosed. (We were actually married in the middle of this nightmare experience with GPA, but that’s a story for another time…) My symptoms showed up at a time in my life when I was starting a new profession in a new location in the US Mid-Atlantic. Although my partner was at almost every appointment with me and documented as my contact, we faced obstacles in having him act or receive information on my behalf. We would have our relationship status questioned for what seemed to be innocuous situations. I also faced many professionals questioning my HIV status because of my sexuality and symptoms even though I was in a long term monogamous relationship and had been tested in the past. It all only served to add to the trauma of the ordeal and I don't know that I would be as sane as I am on the other side of this without the support and care of my partner, family, and a network of friends.

    The expense of wrestling with the disease and diagnosis was truly eyeopening. I had just started a new job and had chosen the top tier health insurance by instinct. It was a wise one because less than a year later I only faced the cost of copays for what by all my estimates was a roughly $500,000 dollar medical experience in ultimately diagnosing and treating this disease. I was very lucky and hope that I continue to be. Coming to terms with a lifetime of financial costs because of this diagnosis has been one of the many emotional trials though. Seeing the price tag of every life saving decision, constant office visit copays, arguing with insurance…it’s tiring.

    The healthcare system experience has been a rude awakening for me. I understand that doctors are as fallible as any other professional. I truly don’t mean to paint the system and profession with such broad strokes; it’s just my experience and I recognize how limited that it is. I like to think of my myself as a reasonable, rational, and open minded person, but that’s my experience and I’m constantly surprised by how much of it aligns with the experiences of others.

  10. Likes vdub, Alysia, Rose, drz, bobjannj, Jaha, howard liked this post
  11. #6
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,160
    Post Thanks / Like
    Mentioned
    36 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Your experience with the healthcare system when you first began suffering from GP

    I wrote about my experience with ENT docs here: https://www.wegeners-granulomatosis....3233-ENT-docs-!

    I saw so many docs over the years:

    ENT were the less decent ones.

    I also saw 4 lungs docs. 3 of them were not too bad. The current one is very good.

    2 rheumies: One of them gave me the title of "limited wg" and sent me out without treatment. The second is my current wg dr and it seems that he is learning with me and "on me" during those years. He is gentle and caring so I stay with him even though he makes some mistakes.

    I also saw 2 cardio docs, the first did nothing and didnt care. The second is good.

    1 neurologist which is good.

    3 eye docs: first one: " I only hear about WG from you, but I can tell you that what you have is not wg". He was wrong. I had wg flare in my eyes with episcleritis and the drops that he gave me made it worse. I switched him and found a decent eye dr.

    And 7 gastro docs. But this might not be wg related as at first it was thought that I have colon involvement and later I became sick with second disease (collagenous colitis).

    4 GP which are allways nice and kind but understand nothing.

    After searching a lot I now have good enough docs to count on.

    So keep on checking, my friends - if a dr is not doing what he needs to do, look for another one.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  12. Likes Pete, Marius, Jaha liked this post
  13. #7
    Join Date
    Oct 2017
    Location
    Miami Beach
    Posts
    89
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Your experience with the healthcare system when you first began suffering from GP

    The only thing that saved me was Quest Diagnostics blood test prescribed by a rheumatologist.
    In their lab report, Quest diagnosed my GPA disease and wrote it clearly in B&W. No guessing. No biopsies. No wasted time.

    Same day I started Prednisone, within 2 days, I started MTX chemo.
    Last edited by seied; 10-20-2017 at 12:42 PM. Reason: Add info

  14. Likes Jaha liked this post
  15. #8
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,160
    Post Thanks / Like
    Mentioned
    36 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Your experience with the healthcare system when you first began suffering from GP

    Quote Originally Posted by seied View Post
    The only thing that saved me was Quest Diagnostics blood test prescribed by a rheumatologist.
    In their lab report, Quest diagnosed my GPA disease and wrote it clearly in B&W. No guessing. No biopsies. No wasted time.

    Same day I started Prednisone, within 2 days, I started MTX chemo.
    Can you please tell us more about this test ?
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  16. #9
    Join Date
    Oct 2017
    Location
    Miami Beach
    Posts
    89
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Your experience with the healthcare system when you first began suffering from GP

    Quote Originally Posted by Alysia View Post
    Can you please tell us more about this test ?
    Quest Page1.jpgQuest Page2.jpgQuest Page3.jpg

    Sure, please see attachments.
    It's hard to read, so here is the actual text:



    ANCA VASCULITIDES
    PROTEINASE-3 ANTIBODY 71.0 H

    Since patient sera may contain heterogeneous antibody
    populations, caution should be utilized in interpreting
    results > 8 due to varying degrees of non-linearity.
    Value Interpretation
    <1.0 AI: No Antibody Detected
    >or=1.0 AI: Antibody Detected



    Autoantibodies to myeloperoxidase (MPO) are commonly associated with the following small-vessel vasculitides: microscopic polyangiitis, polyarteritisnodosa, Churg-Strauss syndrome, necrotizing and crescentic glomerulonephritis and occasionally Wegeners granulomatosis.
    The perinuclear
    IFA pattern, (p-ANCA) is based largely on autoantibody to myeloperoxidase which serves as the primary antigen.These autoantibodies are present in active disease state.

    ----
    The Rheumatologist suspected I had contracted parvovirus, and so I hoped.
    After 4 weeks of nasty arthritis all over, parvovirus goes away in 6-8 weeks, I was waiting for
    all this pain, weakness, fatigue, etc. to go away.
    All 3 prior doctors failed to diagnose or even suspect GPA.
    When Quest results came back 2 days later, 8/22/2017 (yes, that fast), everything changed.
    Existing Chest X-rays, tendonitis, sinusitis, urinalysis, atonia, etc. GPA was the cause.


    Ed.
    Last edited by seied; 10-20-2017 at 02:54 PM. Reason: Add info

  17. Likes Marius, Jaha, Alysia liked this post
  18. #10
    Join Date
    Oct 2017
    Posts
    15
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Your experience with the healthcare system when you first began suffering from GP

    Hi Levi,

    Your experience sounds very similar to mine, and I can tell you're reasonable and polite. I consider myself pretty patient, reasonable, and polite which was why my experience was so shocking to me. I had to learn to insist on being seen and heard, which is out of my character.

    Quote Originally Posted by Librarian Levi View Post
    I would add to all this that I don’t know how anyone deals with any severe illness without the help of loved ones and adequate health insurance.
    Can't agree enough with this. It's so important to have a loved one to help advocate for you. I don't know where I'd be without my wife, there were days when doctors would be calling with so much information and appointments and needing to make so many phone calls and I would just be passed out. I wouldn't have been able to handle even half of it alone.

    I guess I need to learn to deal with this now, because the bills haven't started rolling in yet. There will probably be an equal amount of challenge in dealing with my insurance company.

  19. Likes Alysia liked this post
Page 1 of 2 12 LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •