User Tag List

Likes Likes:  0
Page 2 of 2 FirstFirst 12
Results 11 to 16 of 16

Thread: How has Wegeners effected you?

  1. #11
    Join Date
    May 2013
    Location
    Australia- Northern N.S.W
    Posts
    166
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Started in my teeth/jaw, went to sinus, muscles and joints, eyes, ears,lungs and kidneys. Went to hell and back in three months. On maintenance meds currently. Outlook: I enjoy life more than previous, I stop and smell the flowers and appreciate all the small things. There is always many people a lot worse off than me, so I feel extremely lucky, to be where I am am now, every day I awake, is a good day.

    Regards woz.

  2. #12
    Join Date
    Dec 2010
    Location
    Melbourne, Australia
    Posts
    2,698
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default

    That's exactly what I say Woz.

    "I woke up this morning, therefore it is a good day"
    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. #13
    Join Date
    Jul 2010
    Location
    see map location
    Posts
    4,109
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default

    I started a couple threads over a year ago about what I disliked most about having Wegs and another on what I learned from having it. Many of those posts were very similar to these. I could repeat almost every thing that has been said here before. Physically I had almost all the the more common symptoms except saddle nose so far.

    Mine started with nasal crusting and nose bleeds, roving joint pain, scleritis, blood in urine and significant loss of kidney function, major lung damage, skin lesions, worsened neuropathy, loss of balance, loss of hearing, needing cataract surgery on both eyes, getting a BAHA surgery to partly restore some hearing, several biopsies of skin for pre-cancerous lesions brought on by suppressed immune system, gynecomastia, dental problems, and having a TURP surgery due to damage from the CTX meds and some others other issues I can't recall right now due to reduced cognitive ability but other wise I am in great health for my physical shape and considered sort of medical miracle for having the degree of recovery I have today over three years after my diagnosis.

    It took several months of rehab in hospitals, nursing home and out patient clinics but I have learned to walk again although with a wobble that is reduced with use of a cane, feed myself, talk almost normally again and gone through months of rehab to improve my balance, lung function, and cardio system. Mentally and emotionally it was tough adjustment for awhile, counseling helped a bit, but I was so delighted to just get another chance at any kind of life again and stay on the green side of grass or white side of the snow that usually I am very grateful for the life I still have despite the major loss of dreams, health, energy, hearing, my balance, cognitive ability, and becoming a near full time consumer of the healthcare industry. I help support a dozen doctors at six different clinics.

    I need monthly pentamadine nebulizer treatments to prevent PCP. I had a medical appointment yesterday and have one tomorrow and just scheduled four others in next few months. I need laser surgery to remove some scar tissue blocking my vision after one cataract surgery and to get some lesions frozen to remove them but this is just routine maintenance in my book like getting frequent cleaning of my teeth and monthly lab work. Wegs made my diabetes worse and it has taken a long time to try get my blood glucose levels as measure by A1C levels back to what they were before Wegs so that is another major accomplishment. I already had neuropathy and kidney damage and other problems from my diabetes before the Wegs but it made everything far worse.

    Strangely though I am still generally quite happy too most of the time despite my health issues, the stress of all the work need to try maintain my health, and the major changes in my life. I am also recently divorced too. I certainly don't sweat the small stuff much anymore (and most things in life are really small stuff). My near death experiences have removed any fear of death. I now believe i can fairly safely conclude that I can handle almost anything that life might hand me in the future. I really enjoy the small miracles i see in life on a daily basis and i view every day above ground as a good day and a extra bonus and really enjoy the things I can still do.
    Last edited by drz; 11-27-2013 at 05:30 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

  4. #14
    Join Date
    Nov 2013
    Location
    Beaumont, Alberta, Canada
    Posts
    107
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Mike,

    Is that a Beamer in your photo?
    - You can judge the character of a person by how they treat those who can do nothing for them.

  5. #15
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,864
    Post Thanks / Like
    Mentioned
    9 Post(s)
    Tagged
    0 Thread(s)

    Default

    Like Mike-G, started with big ear infection followed by lots of sinus problems and eventually the lungs, with some joint pain thrown in here and there. "Luckily" for me, my lung issues only took 2.5 years to suddenly show up, severely enough to get me a CT scan which looked like Wegs to the overseeing internist. Followed by my first nasal biopsy, which was positive for WG. Unlike Mike-G, no skin lesions, and like him, no kidney involvement.

    How it has affected me spiritually is a lot harder to say. It helps my outlook to finally know what I have and to have this new group of wonderful people to communicate with on a daily basis. It makes me think about my own mortality, and I'm at the age to be doing that anyway, but it clarifies the importance of getting my affairs in order so I can be at peace when the time comes. I may be around for a long while yet, and if so, I'd like to make every day count for something. This speaks to the human condition in general, but having a serious illness and knowing that others have died early from its complications does bring things into perspective a bit.
    Anne, dx'ed April 2011

  6. #16
    Join Date
    Nov 2013
    Location
    Manitoba, Canada
    Posts
    18
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Mine started with nose bleeds, joint pains and stomach aches. Was originally diagnosed with just sinusitis and was giving medication for this, none of which worked over a month period. I then became very anemic and lethargic and upon blood work being done by my family dr was rushed to hospital. Blah blah blah, kidney biopsy, diagnosis, kidneys failure, among other issues.

    I believe, like Ann, that I'm very grateful for being where I am and not taking anything for granted.
    { Thomas D }

Page 2 of 2 FirstFirst 12

Tags for this Thread

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
  •