living with WG

[Gail]

Hiya, I just found this site today.
I was diagnosed with WG in 2000 after surgery to remove lower third of right lung. (Had been ill on and of for years since I was 22, sever to mild, fatigue, rashes, leg aches, sores, coughing up blood.) Finally had a name for my ills and relieved that it wasn't all in my head. I have sinsus crusting and inner ear damage (wear aides now), a constant unpredictable cough. (was on medication Bactrim DS 800/160mg for 8yrs) came off in Dec 08, I'm in remission and just live with the damage caused by the WG. I have a very loving and supportive husband and family. I had babies in '88 and '91
while I was apparently WG active and didn't know it. So many times they thought I just had a bad flu bug or was over tired and stressed, how wrong they were. I worked as a family daycarer (children don't mind my cough)... and have a very full and happy life. To those who are unsure I wish you the very best, every road we travel is different.

[Doug]

Welcome to the site, Gail! We definitely have a wide variety of experiences with our disease. You and Jack seem to be the longest sufferers, and bear the scars.

[Gail]

Thanks for the welcome Doug, it nice to be able to talk to other people with the same problems. I am one of the lucky ones, I feel lucky. I have had this for a long time and I have no idea when or if I'll cme out of remission like so many others have. I try to stay possitive and don't think about the down sides.

[Gail]

I'm still working this site out, I've already got lost lol

[coffeelover]

Welcome Gailm I love your positive attitudem. You are an inspiration
Lisa coffeelover

[Gail]

Thank you Lisa-coffeelover ... I wish I loved coffee but I'm strictly tea only lol

[jola57]

Welcome Gail, good to know (not to say it is good at all) others suffered so long with undetermined ailments that went undiagnosed. I've had a dry choking cough since my 20's, and sinus problems, then in my 30's muscle fatigue. Always just put id down to just life being life. It's nice to have this on line family to hear us out and know that as one of us put it, this new BFF gives us new daily normals and we just have to learn to live with. I was diagnosed late 2006 when I literally could not move.

[Doug]

The information on the internet suggests that the onset of WG is sudden, and death inevitable for 9 out of 10, if not treated. One site suggests 65% will die within 5 months of onset, 85% within 10 months of onset, and 92% within two years. Certainly, the doctor who diagnosed me in December 2003 used two years as the prognosis for how long I had to live, I was so out of it when I became his patient. (9 in 10 die within two years; I thought of myself as one of the 9, he had objective evidence to suggest otherwise!) What does it all mean? Don't get too wrapped up in the numbers, I guess. I worked with numbers most of my work career, and two principles were my guides: "Torture numbers long enough and they will confess to anything", and "A thousand probabilities do not make one truth". It is interesting to find out there are Weggies amongst us who fall outside the quick onset pattern. I guess this means there's even more mysteries about this BFF than just what causes it. Does anyone else have thoughts on this dichotomy?

[Sangye]

The best analogy I've been able to come up with for Wegs is that of a wildfire. Might start quickly or slowly, spread fast or stay contained, smolder a long time without progressing much or frequently flare up, might be disastrous or not do so much damage, etc....

Gives some idea of the unpredictability, uncertainty and inability of anyone to give an accurate prognosis. And-- though no one wants a diagnosis like Wegs-- how grateful we are for the days that the house isn't on fire!

[Gail]

Hi Doug,
So many things were happening to my body and I was so ill at some stages, but the kidney biopsies and blood tests were inconclusive. My Doctor never told me 'suspected' WG until after I was diagnosed by someone else years later. They initially started treating me for Lupus. I've had blood loss from my kidneys, terrible nasal crusting, rashes, sores, swollen joints, hearing loss, migraines, coughing and at one stage the cartillige between my joints became so sore I couldn't move. These things were happening to me while I was trying to be a wife and mother and I was going back and fore to Doctors, having bloodtests, biposies, skin scrapings, xray, CT scans, and finding out nothing, one Doctor even had the gall to tell me I was allergic to my kangaroo (a I was hand rearing a joey at the time)!! Then in 2000 when I began coughing up blood a specialist diagnosed mewith brochiectasis (which one day would require a lung transplant) I guess I was glad it wasn' cancer and we decided to take our kids on a holiday before I got too sick. Came back went in for lung surgery and they removed my right lower lobe, ten days later they said it was WG. I found out I have an Uncle with WG as well but they say it's not hereditary and he has sores
that won't heal and bad joints but none of the respiratory symptoms and he smokes ! He's quite bitter and says we're not the same and we don't have WG.... he don't talk about it. After hospital they gaveme a huge bag of literature, was quite depressing and I put it away as I found it was making me depressed. I just had my nuclear medicine at RPH, took my pills and went on with my life and started learning to live with WG, got my hearing aides, that was a turning point, wonderful to heart he things I had missed for years. I just wish I could control the coughing fits so I could be confident enough to get a job again. I am confused as well, I should be dead, but here I am .... What do they really know about WG .... we're all casestudie really.