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Thread: Seven years ago today I had a lung resection

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    Default Seven years ago today I had a lung resection

    Today marked seven years since I had a lung resection surgery to remove cavitated masses from my lung. They remove part of my left lung for a good biospy, at a local hospital. They could not find what I had and the surgeon called me an oddity. He told me that I needed to go to a larger facility. I was pretty sick and didn't have a proper support group to help me get somewhere else. I kept having to be hospitalized with high fevers and what they thought was pneumonia. By the end of May and the first of June I finally had a friend tell me to get an appointment at Cleveland Clinic and that she would take me. I called and got in with a pulmonologist, who sent for my biopsies. He and a team of doctors analyzed those and a Ct scan and he called me at work in July to tell me they were 99.9% sure I had Wegeners Granulomatosis. He then set me up with a wonderful Rheumatologist that started me on treatments. I know someone or something was watching out for me or I probably would not be around.

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    I'm glad you are here, Jana! I had scattered cavitary lesions in my lungs, but got the feeling they were small, and not masses. No biopsy was done because they got it through my nose.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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    I always thought you were a little odd also but just couldn't put my finger on it Glad they did !!
    Life isn't about how you survive the storm, but how to dance in the rain !

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    Yeah! I'm so glad your friend took you to CC.

    You're only just over a week ahead of me. I had my lung biopsy May 8, seven years ago. I was lucky though and got my diagnosis before I even came out of the anesthetic as the doc in charge not only brought it the surgical team on the weekend, she also had a pathologist in the room to make the diagnosis. I woke up with a diagnosis in hand.

    I didn't have cavitating lesions on the first go at this disease, but I did have some doozies on this last flare (a year ago right now.) My biggest was 3cm on my left lung. A perfect little circular hole on the x-ray. Bigger than a $1 coin. Along with the granulomous lesions and the pulmonary embolism (clots in my lungs) my collection of lung deficiencies in the last year have kept me from enjoying my oxygen as much as I like, but what have we learned over the last 7 years??? Baby steps forward.

    I am glad we both landed under the care of good docs seven years ago. I'm glad I got to meet you on here, and I'm glad we have been there for each other through our journeys.
    Here's to seven more, times seven for good measure.

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    Thanks to my friends for your kind words. I was an oddity, with no positive Anca test. It seems like a lot of us have anniversaries around this time of year. It is so good to go through this with such a great bunch of people.

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    Quote Originally Posted by Jaha View Post
    Thanks to my friends for your kind words. I was an oddity, with no positive Anca test. It seems like a lot of us have anniversaries around this time of year. It is so good to go through this with such a great bunch of people.
    My Wegs dx anniversary is right around this time, too, early April of 2011. Lots of sinus stuff for a couple years prior, but then it went into my lungs in January 2011, and as it progressed and got worse, of course I thought I had pneumonia, but nooooo..... My silly saddle nose waited until right before dx to do its thing, making my ENT a lot more sure that I had it, before doing the biopsy that proved it.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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    Thanks for posting your story Jaha, it always makes me feel so humble and yet happy to be in the company of so many courageous people/friends!!

    And by the way, what is it with this April/May DX "spike"??? I spent my April birthday in hospital 9 years ago being told that with out treatment I had about 3 weeks to live

    and yet here we are.. Good Luck to you and Happy Days ahead.

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    Marta,
    Are pulmonary emboli common with lung involvement in GPA? I do have lung involvement with my GPA and was just diagnosed this weekend with DVT (deep vein thrombi) in my leg and PE (pulmonary embolus). So it makes me wonder if there is any connection beetween the two.

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    Hello PCrowle,

    I also got diagnosed in May, seven years ago. May kinda sucks from that respect. I'm sorry that we're on here talking about this rather unfun topic because of our eventful Mays.

    When my doc and I figured out it was PE that was causing all my post treatment problems and why I was getting worse rather than better after the RTX, she decided that part of her treatment protocol from that point on would include baby aspirin as a preventative for the potential of blood clots. She had been considering it, and my PE was the straw that broke the camel's back. So, to answer your question, I think there is an elevated risk for clotting with WG. My DVT came after my RTX infusion last May/June, but we didn't figure it out until July. I wasn't sure if it was treatment triggered or disease triggered, but my doc believes it's the disease, which is why the baby aspirin is coming into play. It doesn't contradict anything in our drug arsenal and is a pretty minimal insurance policy compared to the problems clotting can cause. Now I'm on Xarelto (15mg/day) but I hope that I can get off that soon. My GP suggested I'm on it for life, but I'm hoping my rheumy doesn't feel the same.

    I hope that you're feeling ok. It takes a few/several months for the body to re-absorb the clots, so you don't want to be too active during that process so that you don't throw a clot. It takes even longer when we're being treated for WG because it's the immune system that reabsorbs, but it's also the immune system we blow to smithereens with the treatment protocols, so this particular combo (PE &WG) takes a while to resolve on a physiological level. I call it a universe forced rest period. Enjoy the rest.

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    Marta,

    Thank you so much for your reply! I am doing OK. No new symptoms since the weekend. But based on what you have told me, I am going to discuss this issue with my rheumatologist! I wish they would warn us ahead of time about these possibilities so we could be extra watchful. I am on a Xarelto starter pack now, 15 mg twice a day for 21 days, and then 20mg for the next ten days this month. I imagine a very slow taper after that. Thanks also for the comment about limiting any vigorous exercise. It makes sense. I certainly don't want to throw another clot!

    Patricia

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