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Thread: Celebrate how far we have come!

  1. #21
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    Default Chronic nasal problems may precede GPA?

    Another tidbit I forgot to include was during the discussion it came up that I started having nasal congestion, ear infections, blocked Eustachian tube in childhood which lead to several several ear operations, sinus infections, bronchitis etc. Dr. Specks mention it is likely these infections may have set the stage for the Wegener's disease. So there is another vote for infections being possible cause of Wegener's. I took de-congestion meds for years and also had allergy shots for years to try reduce the nasal congestion and excessive mucous in nose and throat.

    Another things I learned was the Weg's damages nasal passages so the little hairs that are suppose to move mucous out and down the nasal passage don't work any more. This leads to the scaling and dried mucous that often contributes to nasal crusting. Thus nasal rinses do two important things--move the mucous out and moisten the inside of the nasal passages to reduce scaling and crusting. The excessive mucous tends to run down the throat and this plus damage to bronchial linings going to lungs and in the lungs contribute to the tickle and dry cough many of us experience at times. This made it easier for me to understand why I should try do the nasal rinses twice a day even when I don't feel congested.

    Another quote I like: Knowledge is power! Wisdom is using it to make good decisions!

    To me this means we need to learn as much as we can about this dreadful disease so we can make good and wise decisions on how to best take of ourselves and try attain and maintain good health. right? I appreciate all the helpful info I receive here as we pool our knowledge and check out our ignorance. Thanks for all your help, encouragement, and positive affirmations.
    Last edited by drz; 03-22-2012 at 09:12 AM.

  2. #22
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    Good info, DRZ. I had bronchitis many times as a kid, plus asthma and some nasal crusting. I never had an ear infection or sinus infection until I was 56 years old. Everyone's experience is different. But I don't doubt that my childhood problems could have set the stage for WG. As for the nasal rinses, I was doing them twice a day, but have gotten lazy since feeling better. So I hope what you said will spur me to be more diligent! I also find inhaling steam from a bowl of hot water, with a towel over one's head, can really help to loosen up the crusts before the sinus rinse. I add mint leaves to take the edge off the water and help open things up.
    Anne, dx'ed April 2011

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    Thanks for reinforcing those points drz.
    Phil Berggren, dx 2003

  4. #24
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    Glad your appointment went well at Mayo Drz. Dr. Specks sounds like a really good doctor taking time to fill you in on recent developments, usually they try and get you in and out as quick as they can. When you feel you are in good hands it helps to cut away a lot of unnecessary worry. No harm keeping an eye on your kidneys by doing monthly labs, at least they are being thorough.

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    That was great info, drz. Thanks!

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    Default More good news, well sort of??

    I think after several months I finally got a good answer about my gynecomastia. It is rare for men but a lot more common than GPA. The explanation for its appearance last year seems to be it is another side effect of my treatment for Wegener's disease. My ratio of testosterone to estrogen is now out of whack due to early testicular failure which apparently was caused by an adverse reaction to the IV Cytoxan meds I had almost two years ago. I remember very vividly that my urinary track locked up and I couldn't empty my bladder. I ended up with a catheter for several (3-4) months and frequent bladder infections and irritation and cramping. I also had enormous swelling in my male organs which seems to have damage the testicles. This was about the same time my feet and legs were also very swollen and I remember having to wear those special inflatable leggings at night and later the tight support stockings so thought all the swelling was somehow connected. I remember being very happy when i could finally get my shoes on my feet after several months of wearing only slippers.

    The good news is that the pituitary gland seems to be working fine. My testosterone levels seem to have stabilized (hopefully) in very bottom end of the low normal range. The pain from the breast enlargement seems to have subsided so no additional treatment is recommended at present time. The evaluation does not suggest any presence of either lymphoma or breast cancer but now I get to put that on my must watch list too for regular follow up care. I also have a much better understanding why women don't look forward to routine mammograms So it looks like I can cross off the possibility of any type of breast area surgery or cancer treatment in near future so three down (cataract, BAHA, breast) and one to go to repair the damage from Wegener's and its treatment???

    I still need some plumbing work done as my bladder empties very slowly but I feel extremely lucky not to have had any bladder infections for almost a year. This is next problem I need to sort out and to also work on some pulmonary rehab. My goal is to be able to walk a whole mile at one time in a half hour without falling or stopping for long rest.

    My local ENT doctor said my surgery scar looks good. He also cleaned out my mastoid cavity on my ear with hearing aid as wax builds up inside from wearing hearing aid all the time. It feels real good to have that junk out. In 11 weeks i should have my second hearing aid on the BAHA implant and be able to hear in stereo again.

    Spring seems to have arrived here early this year. Ice is out on area lakes so no late ice fishing for people this Spring. Trees are budding out and summer birds are here. Time to start looking for setting up some hummingbird feeders. Other residents say there are usually some about this facility.
    Last edited by drz; 06-21-2016 at 11:37 AM. Reason: OCD

  7. #27
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    DRZ, I'm happy you are feeling upbeat enough to insert those positive emoticons into your post, and talking about spring and hummingbird feeders! It's a beautiful day here, too, and that can make all the difference. The summer bird I'm looking forward to most is Swainson's Thrush. I never see the bird, but it makes a beautiful sound. It should arrive around the beginning of May.
    Anne, dx'ed April 2011

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    This is the tird time that I try to post on this thread! Grrr....

    Wonderfull to read all this good news, drz!
    Wishing you a bright and sunny weekend!
    Living with WG/GPA since june 2010...

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    Wow, between you and Al, I feel very fortunate to just have the problems I have. It is a very scary thought not knowing what can happen next out of the blue. I am very glad that both of you are in a better place with this disease and that it just keeps on getting better.

  10. #30
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    Quote Originally Posted by Debra C View Post
    Wow, between you and Al, I feel very fortunate to just have the problems I have. It is a very scary thought not knowing what can happen next out of the blue. I am very glad that both of you are in a better place with this disease and that it just keeps on getting better.
    Debra, I do not have nearly the problems that drz and many others have. Not that the disease is friendly for any of us. But I would like to keep my own travails in perspective. I may be a Sick Old Man, but I am incredibly lucky nevertheless.

    Al

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