User Tag List

Likes Likes:  14
Results 1 to 9 of 9

Thread: New member diagnosed in January 2020

  1. #1
    Join Date
    Nov 2020
    Location
    Iowa, USA
    Posts
    23
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default New member diagnosed in January 2020

    Hi all! I’m Susan—50 years old and from Iowa, USA. I’ve enjoyed looking through the forum for the past several days and have found that many of you all have had similar experiences. Here is my (sorry, long-winded) story with GPA so far.

    I began having allergy-like symptoms in April 2019, with severe nasal congestion and sneezing. After maxing out on over-the counter meds and nasal rinses, I got a referral to an ENT specializing in allergies. My nasal walls were so swollen I could feel the insides touching across to the septum at times, and I had a tiny amount of bleeding. Eventually my ears felt full and I could not move any air through my Eustachian tubes to equalize pressure.

    My ENT used a scope to view my nasal passages and felt the inflammation was consistent with allergies, and reacted to 10 substances with testing. I was prescribed 2 prednisone tapers which were the only things that provided relief. In October, my ear fullness worsened and eventually had a spontaneous eardrum rupture. Over the course of months, I had multiple visits regarding my “allergies” and expressed surprise that someone my age would develop such severe allergic symptoms and ear problems when I had never had a single ear infection or a reaction to any substance in my entire life. No one seemed impressed. I finally had an ear tube placed in the ear opposite the rupture before I was to embark on my 50th birthday cruise to Antarctica. ENT was not concerned about the ear causing problems during a 3 week trip to a place without ant medical care other than a small ship’s doctor.

    Go figure, my GPA decided to ramp up at the most inconvenient time. On the flight, all of my knuckles suddenly became stiff and painful. I mentioned it to my sister, who was traveling with me, and said, “it’s almost like I have some kind of weird autoimmune condition.” (It was a wild yet accurate guess—I had never heard of GPA.) I became seasick as soon as the cruise was underway and started taking Dramamine. Soon, I noticed that the older guests were passing me on our shore outings while I stopped to catch my breath. I was much colder than I would expect for the climate and broke out in sweats at the same time—I attributed this to seasickness, meclizine, and jet lag.

    Midway through the cruise I developed mild hemoptysis and consulted the ship’s doctor. He (quite reasonably) diagnosed me with pneumonia and started me on antibiotics. Three days later my symptoms had become so severe that I knew I had to leave the ship. It took the entire day for evacuation to be arranged, and by the time a medical plane landed at a nearby air strip I was receiving oxygen at 15 lpm and barely achieving O2 sats of 90%. The luckiest thing for me, was that the airstrip we were near belonged to Chile, so I was taken to a small private hospital in Punta Arenas — Chilean health care is excellent.

    I was admitted to the ICU in Punta Arenas, and was sedated and intubated within hours. I had diffuse alveolar hemorrhage and dumped loads of bloody and secretions via the ET tube and mg hemoglobin dropped to 5.6. I would ultimately receive 8 units of blood. My diagnosis was finally made when the MD performing a bronchoscopy recognized the appearance of vasculitis. I was given massive doses of steroids and became the first patient to ever have plasmapheresis at that hospital. They borrowed the equipment from the Punta Arenas’ public facility.

    Being on a ventilator with a knocked out immune system made conditions perfect for a very nasty pneumonia, which led to sepsis. My blood pressure was maintained on vasopressors and they managed to find a multiple antibiotic regimen that could treat the infection. A tracheostomy tube was placed and I was transferred home to the teaching hospital where I work as a nurse. By the time I arrived I was off pressors but still not oxygenating well. A chest tube was put in and yielded 2000 mL of fluid from a massive pleural empyema. Finally, my oxygen levels stabilized.

    I woke up to my sister’s voice telling where I was—I had no idea nearly 3 weeks had passed since I arrived in the ICU in Punta Arenas. Fortunately, the rheumatologists at our facility have treated dozens of patients with GPA. I got IGG, proper antibiotics and steroids, and at last a solid plan to whip this GPA into submission.

    I spent a total of 7 weeks in the hospital and inpatient rehab. Upon wakening, I had severe neuropathy and could only move my right arm and my head. After a battery of tests including EMG (fun, fun, fun!), the neurology team decided the most likely diagnosis of my weakness and paraesthesia was critical illness neuropathy. On follow-up they are still not convinced my residual neuropathy is due to GPA. Reading you comments here makes me a bit skeptical of that. I was on 80 mg prednisone per day for months and developed steroid-induced osteoporosis which, combined with my non-ballerina-like grace, has resulted in several spine fractures, a broken ankle, and a broken rib.

    I’m doing very, very well now. I’m down to 5 mg prednisone daily and Rituximab every 6 months. I returned to work full time in July. I even saw my staff ICU doctor today and was so happy I could tell him in person how grateful I am that they preserved not only my life, but my heart, kidney, and BRAIN function. My lungs are so much better and kidneys are good—thank goodness! No one here wants this diagnosis, but the experience of all of this hasn’t been all bad. I believe I have become a better nurse in subtle yet important ways. I value all of life’s important moments—and simple pleasures all the more.

    I’m here to take advantage of the wisdom of all of you who have more experience with GPA, and hope to keep it at bay the best I can. I’ll happily offer my limited insights and support to you all here. Looking forward to getting to know you better!
    Last edited by Susan B; 12-03-2020 at 06:10 AM.

  2. Likes bobjannj, Dirty Don, drz, Masha, Ashley37 liked this post
  3. #2
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,285
    Post Thanks / Like
    Mentioned
    17 Post(s)
    Tagged
    0 Thread(s)

    Default Re: New member diagnosed in January 2020

    Hello @Susan B!! Welcome to the club nobody wants to join.

    You certainly had a time of it before dx. Glad to see you’re well on the way to recovery. Keep on keeping on.
    Last edited by Pete; 12-03-2020 at 12:35 AM.
    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

  4. Likes drz, Masha liked this post
  5. #3
    Join Date
    Jul 2010
    Location
    see map location in MN
    Posts
    4,312
    Post Thanks / Like
    Mentioned
    14 Post(s)
    Tagged
    0 Thread(s)

    Default Re: New member diagnosed in January 2020

    Glad you are finally diagnosed and improving again. It is also unfortunate although impressive that you had to go on a cruise and get seriously ill to get the correct diagnosis and treatment. Many of us had similar experiences but today many more doctors are familiar with GPA so it is generally easier to get a correct diagnosis before so much damage is done. Adjusting to the damage can be along term process as you work to recover. Treatment is much better today so prognosis for recovery is also much better.
    Knowledge is power! Wisdom is using it to make good decisions!

  6. Likes Masha, Dirty Don liked this post
  7. #4
    Join Date
    Nov 2020
    Location
    Iowa, USA
    Posts
    23
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: New member diagnosed in January 2020

    Thank you, drz.

    The timing was obviously unfortunate. I did not make clear in my post—I was not formally seen by ENT until early October. I self-treated with informal advice from various colleagues at the surgical center. It’s unfortunate that no one recognized the signs before I went on my trip, and in retrospect the ear and nose symptoms were classic. But in fairness GPA is rare and I was only seen in various clinical settings 5 or 6 times. (Perhaps I should have been a louder complainer, but being raised by a doctor and nurse I was taught there shall be no complaining until a limb is missing or death is imminent!)

    The medical team in Chile theorized the sharp rise in the severity of my illness was triggered by a coronavirus (not COVID-19) infection. I’ve noticed several people on the forum mention they were traveling when various events occurred—I suppose that is a strange coincidence but it did get my attention.
    Last edited by Susan B; 12-03-2020 at 06:15 AM.

  8. Likes drz, me2 liked this post
  9. #5
    Join Date
    Nov 2020
    Location
    Iowa, USA
    Posts
    23
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: New member diagnosed in January 2020

    Hello to you, Pete. It may be a club no one wants to be in, but it sure seems to have some great members!

  10. Likes Pete, Masha, Dirty Don liked this post
  11. #6
    Join Date
    Oct 2017
    Posts
    157
    Post Thanks / Like
    Mentioned
    6 Post(s)
    Tagged
    0 Thread(s)

    Default Re: New member diagnosed in January 2020

    Oh my goodness! I am so pleased you got better. Itís scary thinking that so many people whom get as sick as you did, do not recover well. Iím sorry you got the diagnosis but happy you found us!
    Natty


    Sent from my iPhone using Tapatalk

  12. #7
    Join Date
    Nov 2020
    Location
    Iowa, USA
    Posts
    23
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: New member diagnosed in January 2020

    Iím glad, too. Thanks, Natty!

  13. #8
    Join Date
    Oct 2011
    Location
    London, Ontario, Canada
    Posts
    85
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: New member diagnosed in January 2020

    Welcome Susan! After reading your story I had to shake my head and remember it was YOUR story and not mine. Mind you, I haven't had things as bad as you have experienced. I learned a lot from reading your journey. The worst I've ever had was cyclophosphamide because the methotrexate didn't do its job the way we expected. I'm surprised you went through all of that since last year April. It took me 18 months from my first symptom to finally getting sick from the disease. It was a very slow progression but I never ended up being admitted to the hospital unless it was for a procedure. I hope you're doing much better. Stay safe!

  14. #9
    Join Date
    Nov 2020
    Location
    Iowa, USA
    Posts
    23
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: New member diagnosed in January 2020

    Thank you, Chadwyk!

    Itís nice to have a place where you can find shared experiences.

    I think getting a viral illness might have catapulted me into full-blown disease in the lungs. Had a lot of stress late last year, too. Perhaps that could have contributedówho knows? At any rate, I didnít have to suffer for years until diagnosis, and Iím grateful for that.

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
  •