living with WG

[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!

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.

[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!