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Thread: Celebrate how far we have come!

  1. #11
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    Thank you for sharing your story, drz. I had a few small anxiety attacks while reading it and felt deeply moved by your courage. May you continue to get stronger and stronger, and never know difficult days like those again.

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    Drz, Your story was absolutely amazing. Believe me, whenever I start to feel sorry for myself, I will get your letter out and re-read it. Thank you for sharing with such a difficult time in your life. You are an inspiration to all WGs.
    Ken

  3. #13
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    Drz, you've been through a ton. I'm about two years into my journey as well, but I feel so lucky that things were caught quicker for me. What you have gone through is truly humbling to me. I don't know if I'd have handled things as well as you have. Bless you for your strength.

    I have to agree with the Celebration aspect. From barely able to walk down stairs two years ago in May, I'm now back to mostly normal condition again. My airways will never be fully the same as they were. And I think the lost strength from so long on Prednisone will be pretty slow to return, but to be able to be back this close to normal is a blessing for me. Friday I'll be down to 2 mg of Prednisone, and I've had no issues with the taper this time around (other than fatigue). I think we sometimes forget how much things are better when just living our daily lives.
    ~ Bob

  4. #14
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    Drz, I am so glad that you are in a happy place in your health and life now after the ordeal you and your family had to go through especially when you were so sick back then. You have come so far and I hope each day gets better and better for you. I also hope that your wife starts to improve and send you both my best wishes, you are such a nice man. Sometimes when I check my emails and see there is a message from you every so often wondering how I am doing over my dad's death it touches my heart, you are so kind and caring to others, I think if you were to get sick it would greatly upset me even though I have never met you, you have indeed become my friend.

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  6. #15
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    Default What I learned at Mayo today.

    I learned some things today from Dr. Specks about GPA. first thing most important to me is that my ANCA scores are continuing their downward trend. I have the most common type ANCA for Wegs and seem to be one of the lucky ones whose ANCA scores track the severity of their disease.

    In ICD 11 they are considering classifying these diseases by more objective criteria such as type of ANCA present as this seems more clearly defined and also seems to account for even higher amount of variance than present system. It might not make it any easier to explain to others but will help reduce some of the vagueness and unclear overlap we now see in the diagnostic system.

    They must be extending the longitudinal study cause I had to sign new papers today for a ten year agreement. Sure hope I can finish the whole study.

    The longer you go without a flare the better your chances are of staying in remission. I am working on a year so this was good news for me. Yet....

    The disconcerting part was the recommendation to stay on monthly labs for blood and urine since I could have a silent kidney flare and not notice any symptoms till my kidney was gone. It bugs me that this nasty disease can be like a sneaky bed bug and sneak up and get you and you won't even know it until it is too late.

    The other good news was I might benefit from pulmonary rehab. It won't fix any of the damage to my kidneys, lungs, neuropathy etc that limit my endurance but it could strengthen my heart and help my heart and lungs work more efficiently so I have more energy and endurance so i will try that next.

    My BAHA surgery seems to be healing nicely so only 11 more weeks till I can hear in that ear again. It will be nice to take off my pink pin that says "Please face me--Hearing impaired." I notice today though that only half the nurses at Mayo did, the others talked to the wall and had to repeat what they said.

    The Abraham Healthy Living Center has a nice cafeteria for those who are looking for another eating place and the food seemed more the healthy kind, strange, huh?
    Last edited by drz; 09-09-2014 at 01:10 AM.

  7. #16
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    Quote Originally Posted by drz View Post
    They must be extending the longitudianl study cause I had to sign new papers today for a ten year agreement. Sure hope I can finish the whole study. :
    After everything that you have been through, your strength and spirit. My bets are on you, you will finish the ten year agreement and need to sign up for another ten years.

  8. #17
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    This is good news for sure drz. I hope this is a continuing trend for you.
    Phil Berggren, dx 2003

  9. #18
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    Thanks for the report from Mayo, drz! I'm glad you found a decent place to eat!

    I'm not sure if tight ANCA tracking is "lucky" or not, but it could be, in your case (as it seems in my own), to be a valuable tool in knowing when to act fact. This could be especially important considering the "silent flare" problem with the kidneys.

    Let us know how the implant and the pulmonary rehab work out!

    Al

  10. #19
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    Sounds like a lot of good news for you DRZ. I agree with Lightwarrior, I'm betting on you
    ~ Bob

  11. #20
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    Awesome report and info, drz! You certainly do your homework and ask the right questions! I'm with you on the idea of the silent kidney flare. Definitely my scare. The numbers can change very quickly. I am actually relieved to provide the blood and urine for tests so it can reinforce a positive (or negative) trend. Tell us what your pulmonary therapy will look like...
    KB -- "The good life is inspired by love and guided by knowledge". Bertrand Russell

    Dx in September, 2011. Major involvement: kidneys and lungs. Medical implications: fungal pneumonia, drug-induced hepatitis, allergy to fungal meds, ear infections, sinusitis, gall bladder removal, vitreal detachment, and eye cellulitis. Medial meniscus removal (unrelated to WG). Medications: Rtx, Pred 5.0, Lisinopril, Chlorthalidone, Levothyroxin, Omeprazole.

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