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? :confused::confused::confused::confused:

[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.

[Sangye]

Allergic to your kangaroo.... Well, that's one hypothesis I haven't heard yet!

The "big bag of literature" brought back something I'd totally forgotten. After being on treatment for over a year and still not having the Wegs under control, my new doc at Mayo Arizona gave me choices of using Cellcept, Rituxan or more chemo. We talked it over and he gave me brochures about them to read at home. That night I looked at them with the pics of smiling healthy people sprinkled all over them, saying how happy they were to have such great drugs, that they could get their lives back. I got so mad about having to take more meds, and about how I was "supposed" to just be thrilled about it, that I actually threw the brochures across the room! I'd never done anything like that. It was just like in a movie.

[Doug]

You could tell me a few things, I've no doubt! I feel I'm preaching to the choir, or instructing the traffic cop how to get to Third and Main, but have you seen an Ear/Nose/Throat doctor or pulmonologist about the nature of your cough?

I read through your list of events, and I am staggered that you put up with the pain and impairments for years while you raised a family, too! Whew! Women truly are the tougher of the two sexes!

When they removed the lobe of your lung, did they tell you specifically that it indicated WG? It's common for a lung biopsy to be done on people when the cANCA results suggest WG, but it's also common for sinus and kidney biopsies to be done as well to clinch the diagnosis.

What type of specialist is your primary care doctor? Have you had a chance to quiz him/her about what to do about the cough? I remember a cough before I was diagnosed, but not after.

Are you on Bactrim or that and other drugs for the WG and other complications. (Prednisone put me on heart medications, for one thing- there often is unpleasant consequences of drugs that results in new conditions that need to be addresed!)

All in all, keep heart. You may feel a mess now, but follow your doctor's instructions closely, take your medications, get as much sleep as you can, continue to quiz those of us who have gone before because, even though we have taken different routes to get to whichever "new normal" we currently have, there's bound to be enough experience among us to give you and other new Weggies a nudge, a push, an encouragement in the direction where you will wake up one day and say, "I feel pretty darn good!"

You don't talk about support groups. We are one, of course, but how about family, neighbors, those of your same faith, old friends, people you play cards with, any group aware of your circumstances who stand there with and for you as you deal with this serious disease?

It's OK to have down moments, but a positive attitude is a key to health: I hope there's someone there to commiserate with you, to absorb some of that negative energy and remanufacture it into the plus side of whatever you are dealing with. My quirky sense of humor got me through a lot of tough moments! :p:):rolleyes::cool:

We're all in it together. Weggiehood makes you special. Most of us have never seen another person with the disease. If it weren't for forums like this, we'd never learn how diverse the approaches to treatment seem to be, amongst other curious things.

[Gail]

Hi Doug,
geez I didn't realise I was sounding negative. I have a wonderful and supportive husband he's my rock and he's been with me since we were 16 yrs old, through thick and thin. I also have a very loving family. The friends I have in my life have been there since my school days so my illness doesn't phase them, they dont even think I have an illness most of the time, unless I can't go out because of the cough or headaches. I have to keep out of the sun. I have never met another person with WG. Through FB I started looking this week.
I am being looked after by Professor Frank Christensen, Clinical Immunology at Royal Perth Hospital, I have blood tests, chest x-rays and facial CT scans regularly. I had nasal biopsies as well, they were by far the most painful thing. I was on Bactrim for 8 yrs, but came off in Dec 08. I use Nasonex for my sinus. I see the available specialist at RPH ENT every three months. They know my full history as I've attended the same hospital for years. I've had sinaus surgery 12 years ago, to open up the passageways, it actually hasn't worked very well.
I am a very happy person and I am sorry I must have sounded negative, I was just saying some of the things that I'd been through. I am so glad to be able to write it down for people who understand and have experienced it too. I feel very good these days, I do get tired but thats due to lack of sleep asthe cough keeps me awake, we are trying to deal with this problem, I have another appointment with RPH on the 21st. I'm just about t go and mow and snip my lawns. Have a lovely day, and I look forward to your posts.

Hi Sangye
I can relate to the not wanting to see all those happy faces on the brochers too !
As for my joey 'Buttons" I never gave her up, I continued to raise her even though Dr Singh told me she was the cause of my problems and that 'native' animals harbour worms and diseases dangerous to humans .... mmmm I love animals and always will.
I have a some beautiful budgies in my avairy, 4 dogs and one cat ..... oh and a fishtank. I'm smiling for the beautiful things around me every day.

[Sangye]

Budgies, dogs, cat, fish. Any........rabbits? (Sangye ducks from flying tomatoes)

I didn't think you sounded negative, and even if you want to, it's fine with us if you do. When I first joined this group, it seemed like everyone was so upbeat. I wasn't particularly upbeat right then, and labelled myself as negative. As time went on, I saw we all have ups and downs with Wegs and its aftermath, and everyone just expresses whatever they're feeling in the moment and supports you in whatever place you find yourself in.

I think Doug means having a positive attitude over the long haul is good. And if you want to throw something today, well you just go right on ahead. :D

[Doug]

Hello Gail and Sangye-

Sangye has it right: on the long haul, positive is best, and there are down moments, of course, in everyone's life. Your most recent posting is great! It sounds like you are doing well and have the sort of support that we all need, no matter whether we have WG or are healthy as a 15 year old. Certainly, you are in an area where competent, informed medical care is more likely than in some backwater area. (Is it true that the people of Perth are the most laid back people in Australia?) You are right, the initial postings may sound grim and negative simply because that's where we were at the start of Weggiedom! It's hard to draw a smile on a doctor telling you, as mine did when he declared my a Weggie, that I'd be dead in two years. (I reminded him of that prognosis on the third anniversary of our association! MMMM! That smile just got pasted on that negative thought!))

[Gail]

Yeah us West Aussies are a pretty laid back bunch and Australia is a pretty laid back country in general, I love it here...... even my big dog is so laid back I have to mow around him, then push him out of the way !! He's a Rhodesian Ridgeback (hound family)... my other dogs (chihuahua's are a bit more active and naughty)
I am very happy to have found this site, you guys are already putting a smile on my face. I hope you have supportive people around you too... now how many tomatoes do I have left ... mmm threw that one it's split, that one looks good.

Life is like a pack of cards,
we never know what hand you'll be dealt,
but we have to play on anyway...
looking forward to the next round.
TTFN x

[jola57]

Gail, your cough, is it dry choking like or congested? I think that most of us got rid of cough and/or lung ivolvment pretty quickly once on meds. You mention Bactrim and that you have been on medications , what about cyclophosphamide, prednisone, immuran, methotrexate?. About rabbits, if you read previous post I think you will understand where Luce's honorary New Posts Rabbit comes from. Headaches that I have had for many years (35 years to be exact) were the aura and paresthesis kind of migranes. When I was finally diagnosed with WG and put on drugs 2 and 1/2 years ago, I stopped having them.

Sangye duck, one tamatoe, two tamatoe comming your way (the nice and ripe ones)

[Sangye]

(Zoing! That last tomato just grazed my ear. All that ducking-- I need to rest. I'm just glad it's not pumpkin season)

I still have the same little dry cough I had when my lungs were hemorrhaging. It increases and decreases, but it's always there.

[RCOSSIO]

Wow...Gail my uncle also ws diagnosed with WG or as we like to say in this world your new "BFF" (best friend forever) remember that...anyway back in 92 my uncle was diagnosed with WG or BFF and my grandfather...although never confirmed might have had it as well. Anyway welcome to the forum....:WE FEEL YOUR PAIN..."

[andrew]

Budgies, dogs, cat, fish. Any........rabbits? (Sangye ducks from flying tomatoes)


Andrew clings a tomatoe at Sangye but misses and hits the rabbit picture on the wall.


Yeah us West Aussies are a pretty laid back bunch

Agreed, I have about 900 cousins in Perth (my Mother's family breed like......) that I've mostly never met. Hopefully will get over there one day.

Gail, it's a pleaseure to have you aboard. I hope you enjoy it here!

[RCOSSIO]

that is a lot of shopping for gifts Andrew

[Gail]

ha ha thank you guys, I enjoyed the messages. I've been away for a few days visiting my Mother-in-law. It was really nice to get away, although I did leave my dogs (babies) at home with my 17yr old son and they were'nt happy about us being away! Two of them gave me the cold sholder when we got home .... mmmmm.
Can see a few tomatoes have been chucked around lol
I had an appointment yesterday with clinical immunology, but missed it due the 5hr drive home... and the fact that I thought it was booked for today !! Have resheduled for May !! I'm a silly bugger. I am so glad I found this forum through Facebook....
Jola57, about the cough, it's never cleared up for me, it's a bit spontaneous, dry and rattly, we're still working on sorting it out.
Wow Andrew, as for the breeding West Aussies, I'm glad my family don't breed too much I love the ones I have, thats enough for me, my brother has a two year old and he's like a little cyclone, but a lovable one lol
Rcossio it's amazing hearing about people with family members who also have it, and they say there is no link ????
Take care and keep smiling everyone, it's a beautiful day here. I hope you are all very well.
Gail :-)

[Doug]

Gail- A beaut of a day here, too! at 11:13 AM there's a nice little 14km/h breeze, temp. at 19 C. Spring has sprung in the northern hemisphere! I heard the birds marking out territories and planning how to lure ladybirds into them, for reasons best left to your imaginations! I've opened the front and back doors to enjoy the sounds, feels of spring, and I feel very upbeat and well today! Hope the rest of you are, too!

[coffeelover]

A beaut of a day here in MN too! Spring has Sprung! (seeing lots of bunnies);)