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Thread: New to disease, forum and questions

  1. #1
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    Default New to disease, forum and questions

    Hi everyone,

    I'll go with the short introduction for now, I was diagnosed with GPA in Dec 2014 when my kidneys failed completely. Until that point no one connected the faint dots and it had gone unnoticed. Since then I've went through a phase of kidney nurturing dialysis and to see if they will recover (GFR is now 35) and plasmaphersis sessions with Cytoxan to kill the negative antibodies. I'm currently off dialysis and in an early transitional state of no negative antibodies and working toward remission. I just went through a battle with a low white blood cell count and are battling to also get the red ones up. This has led me from the nephrologists realm into the oncologist one.

    This "adventure" has certainly changed life as I know it. As the single breadwinner for the family, being very healthy to this point it has changed perspectives of the future that we are all still grappling with. I'd appreciate any lessons learned from the group or things I should be considering given how new this is to me.

    Thanks for your time,

    Kgnboy

  2. #2
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    Hi Kgnboy and welcome to the forum.

    It's good to have a great team of doctors on your side and it sounds like yours have at least got you heading in the right direction.

    It certainly is one big adventure, the roller coaster that no one wants to travel on

    If you have any questions, ask away. No question is too big, too small or too silly. It may just be the question that someone else has been too afraid to ask.
    Someone is on here 24/7 as we come from all around this great big world.
    You will also have times where you just want to yell or kick and scream. You can also vent your frustrations on here. We are all here to listen. No point taking it out on the family.

    We are all here for you - welcome to the family
    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

  3. #3
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    Hi Kgnboy,

    Welcome to the forum. Hope you get to feeling better soon.

    If Ashburn is in Northern Virginia (Google maps?), you're not too far from some really good GPA expertise at Johns Hopkins. The rheumatologists there (Dr Seo) are top notch and should be able to better connect the dots of our dumb disease.

    With effective treatment and good healing, you may be able to get most, if not all, of your pre-disease life back.

    Keep us informed of your progress!
    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. #4
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    Pete,

    I'm working with the Nephrologist group (Nephrology Associates of Northern VA) since mine started with kidney's. I admit ignorance so what does a rheumatologist group focus on that they don't? This group appears to have a group of existing GPA patients and were the ones that had me do the plasmapheresis out of iNova Fairfax. I thought of John Hopkins, but frequent drives up there would eliminate my ability to keep working. Any information is appreciated.

    Thanks,

    Dean aka Kgnboy


    [QUOTE=Pete;96337]

    If Ashburn is in Northern Virginia (Google maps?), you're not too far from some really good GPA expertise at Johns Hopkins. The rheumatologists there (Dr Seo) are top notch and should be able to better connect the dots of our dumb disease.

  5. #5
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    Hi Dean,

    GPA/Wegener's is one of the forms of Vasculitis. Most Vasculitis specialists are rheumatologists and generally look at disease from a more wholistic perspective. Having said that, if you're happy with the care from your current treatment team, that's great.

    As for traveling for care, I see a rheumatologist at Cleveland Clinic 2-3 times a year. The Clinic is a little over two hours from home. I get all the labs she orders done here in Columbus at my family doctor's office. I retired before I got sick, but the need to travel to a specialist wouldn't have been an issue for my employer.
    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. #6
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    I agree with Pete, you need to see a Rheumatologist for Wegener's.
    you will potentially see several other doctors ending with an " ist " until things get stable. I had WG mostly in my kidneys (nephrologist) and lungs (pulmonologist).
    unfortunately I cant help you with the dialysis questions. I was a the tipping point of needing it but the Cytoxan started working before I needed it.
    on Cytoxan its not unusual for the white cell count to drop, I know mine did. I never had to see an oncologist due to my cell count. but I see one that is also a hematologist due to my blood clot issues. I have Factor V leiden also.
    I had to end up taking 3 months off work after I got diagnosed. but over the years things have gotten a lot better for me. pay attention to what you body tells you on if you are to tired or weak to hang out with people. I know that's hard to deal with at the time but you will figure out what your new normal is and it will get better as time goes on.

    also don't be afraid to ask your doctor anything. they can treat you better if you tell them how your truly feeling. and I know from my experiences I prefer a doctor that if they don't understand a lab, or a treatment to send me on to someone else. I had one local doctor that said it was all in my head.

    as others have said too you can rant / ask questions all you like. someone on here will relate and give you some advice.
    Dx'd December 2000

  7. #7
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    Welcome, kgnboy. Others have given you good advice. I just want to assure you that this is the the place to be to talk about having Wegeners. The people are the best, the info and support more comprehensive than what doctors have time to give you, and the overall feeling of not being alone with this disease will lessen your stress level, an important factor in recovery.

    I've heard great things about Dr. Seo at JH from several people over the years, and like Pete says, you could just see him occasionally for an overview of your progress and the different considerations involved from a rheumatology standpoint. He would be be equipped to talk about the kidneys, but that is a serious enough involvement that you are right to be under the care of a nephrologist. The two docs could consult with each other, too, about what is going on. Best of luck, and keep us informed!
    Anne, dx'ed April 2011

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    Default New to disease, forum and questions

    Hi and welcome. I have found lots of great advice on this forum for, things to ask doctors, medications and side effects and lots of love and encouragement from this group.
    For me the biggest advice is to be informed, to have a person help you advocate for your health. That person needs to be there to support you and to ask questions when you are dealing with your emotions and finding your own voice. Sometimes it just gives you time to process and organize your thoughts while your advocate is talking to the doctor. Take Care, Donna
    Last edited by Donna-from-Philly; 03-18-2015 at 04:30 PM.

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