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Jonathan
01-09-2009, 12:24 AM
Hello All,

I've had WG for 19 years (I'm 31).

I had a horrible cough I couldn't shake for weeks which got progressively worse, the joints in my elbows then seized up and I could not straighten my arms. My GP diagnosed a number of things such as Asthma etc.

Cough got worse and I started coughing up blood, had various blood tests which baffled the Doctors as they could not work out what was wrong, eventually started getting very weak and not eating and I then had a lung x-ray which showed some worrying signs.

Immediately admitted to hospital where it was discovered my kidneys had failed and Wegeners was suspected, transferred to the renal unit at a Children's Hospital and wasn't expected to make it through the night, I don't remember much apart from a priest coming to give me the last rights.

Somehow made it through the night and had a tube inserted for Plasma exchanges that morning and a Kidney Biopsy taken (lungs were luckily ok). Started on Cyclophosphamide and various other treatments and slowly started improving. They put me on limited liquids which I found hard, I used to look forward to brushing my teeth so I could take a few sneaky sucks of a wet toothbrush.

The plasma exchanges and drugs started working and my kidney function began to improve and after over a month or maybe longer in hospital I came home still taking Cyclophosphamide and prednisone, I had some slight kidney damage and they now run at about 75% of capacity.

Slowly reduced the Cyclophoshamide and came off after about 3 months, Prednisone was another year or so and then onto some Blood Pressure treatments.

I lost a lot of weight (the dreadful hospital food didn?t help) but the Pred soon had me eating a lot and gaining weight.

Had a brief relapse at 18 when my nose cartilage collapsed (only symptom) which got fixed with surgery. Been in remission and off meds (apart from BP) for over 13 years now.

crackers
01-09-2009, 01:07 AM
hello jonathan.that must have been scary stuff for a 12 year old i was bad enough at 54.you say you've been in remission for 13 years,do you get any of the symptoms such as fatigue or muscle/joint pain or have they completely gone away.
john

andrew
01-09-2009, 07:09 AM
Hi Jonathon. Welcome! Yeah, limited liquids is a killer! Very hard to cope with especially with the hospital aircon drying you out.

Glad to have you aboard!

Jonathan
01-09-2009, 10:28 AM
Whilst I've been in remission for a long time I fear of late that WG is sneaking back into my life.

I could do with talking to someone who understands, is anyone willing to chat on msn/skype etc? Please let me know if so.

Thanks.

andrew
01-09-2009, 12:16 PM
Hi Jonathan...
I'm on Skype most nights (Australian Eastern time). Just click the Skype logo at the top right of this message. If I'm online it should be green but give it a try anyway. Can only text chat at this point because my microphone aint workin :mad: Once that is going we can voice chat if you like.

What's telling you that WG is coming back?

crackers
01-09-2009, 12:27 PM
jonathan no 2 no 10 no 100 people who suffer from wg have the same symptoms.if you have concerns about your condition express them here and you will get a respose from from other wg sufferers.

Twice
01-11-2009, 12:45 AM
Hi Jonathan,

Welcome to the site - it's great. Like you, I've been living with this for quite a long time and it's a great relief to be able to communicate with people who understand the ups and downs.

Sarah

brian willman
09-06-2009, 09:16 PM
Hi Jonathan

I live in south west London - Richmond. I'm 53 and have knowingly had WG for 16 months. I was treated in St Georges Hospital, Tooting and am still an out patient visiting Kingston Hospital. I'm in good shape but still on quite high drug levels to control the disease.

I'm in contact with a local teacher with WG who is 40 - I am meeting her for dinner on Thursday for the first time.

Where are you?

Best wishes, Brian

Sangye
09-06-2009, 11:09 PM
Hi Brian,
Nice to meet you! I like how you said you've "knowingly" had Wegs for 16 months. That's a perfect way to describe the onset with many of us. I've never found a short way to say it!

I had to giggle at the location of St Georges Hospital. At first I thought it was a lower GI side effect (ahem) of the treatment.... :o

My poor knowledge of geography is matched only by my 4th grade sense of humor.

brian willman
09-06-2009, 11:57 PM
Hi Sangye

Nice to hear from you.

I'm really sorry but I don't get it. US/UK miscommunication? Is it a reference to flatulence? If so, its not a UK word.

For the record, Tooting is a residential area of south London - not famous for much. There is Tooting Broadway, Tooting Bec and many other Tootings!

I'm beginning to laugh at it myself now.
:D
Brian

Sangye
09-07-2009, 12:05 AM
Yes, it's a reference to flatulence. And now I'm just busting a gut laughing at "... and many other Tootings!" I'll bet! :D:D

Luce
09-07-2009, 06:37 AM
Hey Sangye, I was born in St Georges hospital and lived in Tooting for the first 3 years of my life! Jokes about Tooting are out of bounds.

Up the Tooting Bec!

Doug
09-07-2009, 06:45 AM
Hello All,

I've had WG for 19 years (I'm 31)....

They put me on limited liquids which I found hard, I used to look forward to brushing my teeth so I could take a few sneaky sucks of a wet toothbrush.


I am astonished at the disproportionate number of people on the forum who were in their teens or early 20s when diagnosed. I wonder if that reflects ability to use computers more than some demographic shift in initial diagnosis age. Or what? Any thoughts on that, forum users?

Also, I got a chuckle out of Jonathon's surreptitious water augmentation strategy!

Sangye
09-07-2009, 07:50 AM
Doug, I've been wondering the same thing (about Wegs dx in the teens/20's, not Jonathon stealing water from his toothbrush). It'd be nice to see statistics on age at onset.

But more importantly, are you really going to let all the "Tooting" jokes just go by without comment? I mean, Luce has just revealed she's a native Tooter! People like us could run with that one for a good long while. Thankfully she has remedied the situation, but an entire city (town?) remains in need of Beano. :eek:

Doug
09-07-2009, 11:21 AM
Dang! "to toot"- oh, yes! Reminds me of a commercial on US television just now where a distressed fellow is being interviewed. A male subordinate comes into the office and says to his female boss, "Your son is on line toot". I will spare you the rest of the references. All the while, each reference reminds the guy hoping for the job that he needs the product "Gasex" (I think it is) to resolve all his problems. As I recall, I needed that product once, and you trade a toot for a big belch, which I suppose is one notch higher on the socially acceptable body sounds list. Oh weLL! I confess I thought "haha" when I saw "Tooting", but I tried not to react to it in my usual knothead way in case it was named after an early English hero or, well, something sacred to English folk everywhere! Now my curiosity is up.

Doug
09-07-2009, 11:32 AM
Tooting - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Tooting)

Well. Tooting has an incredible and rich history, as always seems the case when you come across an English placename with a quirky spelling or pronunciation! Read and enjoy, or, for Sangye and me, read and appreciate the history, the story of Tooting. Link above ^^^^:o

(I see some other Weggies are starting to see the possibility of getting together! Go for it, my friends. You will find it an enriching experience!)

Sangye
09-07-2009, 11:59 AM
That was very interesting reading.

Still, my 4th grade mind can't seem to let go of the Tooting historical occurrence in 1703 AD: "Daniel Defoe was a Tooting Presbyterian Minister in hiding." Well, at least he found some privacy.... :D

Doug
09-07-2009, 04:05 PM
(As well he might, as he was in Tooting.)

Jack
09-07-2009, 09:15 PM
As far as references to Tooting go, the age on the Forum seems to have fallen to around 5 years old. :rolleyes:

Sangye
09-08-2009, 12:16 AM
Hey! I resemble that remark!

Doug
09-08-2009, 01:58 AM
...and I was lead, if willingly, astray. Briefly. But not too far.:rolleyes:

Most days people complain because I am too serious. Not on this forum necessarily, but most people and most days. Then, I break out from my quiet mode, only to step in it. So to speak. :mad:

Sorry. In my family, the act is known as to "la-la-fa". There's a musical connotation there, and it was concocted by my sister with the BA in, well, music. To minimize concerns that I come from a refined background, once the "fa" had been "la-la-ed", the appropriate family response was "Hit the dirt!" Now, "Did your duck quack?" or "Did your dog just go into the corner and die?" are typical polite responses. My mother tells a joke about a Scotsman's Swanette that I get but don't think is funny, unless a Swanette is like an aeolian harp. In that case, it's hilarious!:(

But remember all, the sun will come up tomorrow! (There is no sense, however, to look for Sandy.):)

Welcome back, Jack. I'm sorry you weren't feeling well at the beach. I've felt a bit off the past three weeks myself, having to bring out the cane and make other adjustments. I'm better now, and hope you come around soon yourself.

Luce
09-08-2009, 04:46 AM
I still think having "Tooting" on my driving licence is hilarious and it took me until I was 6 or 7 to realise that when Mum and Dad referred to Tooting, they were discussing a place. I didn't necessarily think of the bodily function, the word was just foreign to me!

Doug
09-08-2009, 09:58 AM
I still think having "Tooting" on my driving licence is hilarious and it took me until I was 6 or 7 to realise that when Mum and Dad referred to Tooting, they were discussing a place. I didn't necessarily think of the bodily function, the word was just foreign to me!


Imagine my childhood chum's Danish cousin, chained for life with the name "Anus", pronounced "AH-noose", except when he visits his cousins in America. Probably the root of what I regard as his unpleasant personality. :) (aside for Sangye, so don't read unless you are Sangye: "....his sxxxxy personality.")

In American cars, the horn is tooted to alert others (or, more aggressively, "honked"). A person accused of self-aggrandizement might be spoken of as someone who "toots his own horn".

All in all, I feel I could visit Tooting without a permanent smirk on my face. I'd love to see Roman-- or even pre-Roman- archeological sites in Tooting, or visit local museums to see artifacts of the same vintage! On the other hand, I hope I never see Anus again. He's a gigantic axxxxxx.

Sangye
09-08-2009, 10:18 AM
Imagine my childhood chum's Danish cousin, chained for life with the name "Anus", pronounced "AH-noose", except when he visits his cousins in America. Probably the root of what I regard as his unpleasant personality. :) (aside for Sangye, so don't read unless you are Sangye: "....his sxxxxy personality.")

Oh...this is going to be a GREAT post!



All in all, I feel I could visit Tooting without a permanent smirk on my face.
Not me, no way. I'd be laughing the whole time. They'd probably ask me to leave. Really, I'm that immature. Really.



On the other hand, I hope I never see Anus again. He's a gigantic axxxxxx.Laughing my AH-noose off..... :D:D:D

Doug, that has to be the funniest post you've ever written.

brian willman
09-10-2009, 05:20 AM
For your enjoyment and eduation, some other interesting english place names. All are genunine.

Pratts Bottom
Asick Bottom
Plucks Gutter
Upper Thong
Lickey End

These are the cleaner ones!

Doug
09-10-2009, 05:30 AM
Nothing tops the Grand Tetons range in Wyoming for beauty. We have the less prominant Squaw's Mound in Nebraska, but you play the hand you're dealt.

Thanks for the English place names update. I love geography and the history implicit in the names. Nothing like a dose of homework to stop the tittering. :p I'm headed right to Google Earth to find the new names! :eek:

RCOSSIO
09-10-2009, 08:39 AM
...and poor Jonathan does not have an answer other then "Toot". Truthfully, I think the only way a flare may be coming is to check with your Rheumy and have them run some blood work, maybe a chest X-ray and an ANCA test. The problem with WG is that it is so systemic, that any part of your body can be flaring or NOT...and it is frustrating because you don't know if it is just soreness, a cold or Wegs. Additionally young people still have an overactive immune system which causes additional problems for weggies. I guess as you age your immune system slows down and probaly..."not sure" but Wegs does not flare as frequently.

Anyway, glad you join the forum and figured out there were a lot of loonies (like myself) to deal with...hahahaha!!!!! :D

jola57
09-10-2009, 08:42 AM
I always wander about what people thought way back when they were naming the villages. Driving thru UK this summer and Poland was a hoot or did I mean a Toot:D

Sangye
09-10-2009, 08:49 AM
Richard, with my current flare, my blood work has remained normal (despite coughing up blood), my ANCA is never reliable so we don't even check it, and my chest x-ray only shows possible atypical pneumonia. It was my symptoms, a bronchoscopy, several chest CTs (worse each time) and the fact that I didn't respond to antibiotics that demonstrated the flare. Once we had all that info, we had an answer toot-sweet....

jola57
09-10-2009, 08:54 AM
Sangye, what are you doing that you get pneumonia? Stay home and take care of yourself. Coughing up blood is not fun:(

Sangye
09-10-2009, 09:01 AM
I didn't have pneumonia. We thought I had it several times in a row (April to June), but it was only once I started coughing up blood that we could see in retrospect that it was never pneumonia, but lung hemorrhaging (ie, active Wegs). They look the same on x-ray and CT much of the time. And for whatever weird reason, even when my lungs are full of blood, I just don't really cough much up.

Don't worry, I'm extremely careful about exposure to germs. I live alone in a little basement, so I don't have to be concerned about people bringing home "company." And now that I'm on ctx, my WBCs are dangerously low. The ctx isn't really working, but we can't increase the dose because of low counts.

RCOSSIO
09-10-2009, 09:09 AM
I heard that before Sangye about blood work being normal...but your body out of whack. Just go to show how systemic this disease is. My rheumy once told me about one of his patient who developed Wegeners in her breast and it only show up there. They thought at first it was breast cancer and when they did a biopsy, that when they discovered it was WG. Just goes to show how difficult a diagnosis of Wegs can be.

Sometimes I have an allergic reaction and tend to cough more than usual. When I went to the pulmonary doctor who specializes in Wegs, she did not find any Wegs flare and attributed to a mild asthma case.

Go figure!!

...and for all u footbal fans out there...Go Dolphins!!!!

RCOSSIO
09-10-2009, 09:11 AM
Sangye...admit it, you actually moved to the Austrian "Escape The Room" I heard it was nicer and bigger than your palace!!!!!

Hey I might be visiting D.C soon, I will let you know!

Sangye
09-10-2009, 09:30 AM
Yes, it's true--I'm moving to better digs. The Austrian version is called "Escape Da Room for Giiiirly Men." Arnold Schwarzenegger wrote the program.

I hope you can visit! Those Midwesterners are kicking our East Coast butts when it comes to Weggie meet-ups!

jola57
09-10-2009, 09:37 AM
I still feel deprived, c'mon Canada lets have a canuck meeting

Doug
09-10-2009, 02:42 PM
Yes, it's true--I'm moving to better digs. The Austrian version is called "Escape Da Room for Giiiirly Men." Arnold Schwarzenegger wrote the program.

I hope you can visit! Those Midwesterners are kicking our East Coast butts when it comes to Weggie meet-ups!

(You got that right! Midwesterners rule!:cool: At least for now.)

Doug
09-10-2009, 02:45 PM
I still feel deprived, c'mon Canada lets have a canuck meeting

Yeah, BC, at least, holds good potential, and the prairie provinces can make it international by talking us Middlewesterners into a hook up somewhere on either side of the border. Some big distances, but....!

coffeelover
09-14-2009, 03:16 AM
(You got that right! Midwesterners rule!:cool: At least for now.)

Lisa very much agrees!:)

Doug
09-14-2009, 02:44 PM
Yeah, but someone very casually mentioned getting together with another weggie for the first time the other day. Think it was one of our English friends...! To the best of my knowledge, no one commented on it. I guess we are too jaded to react to it any more!

Jack
09-14-2009, 03:36 PM
Weggies? Hu! Two a penny!

(Not that I have ever met another one ;) )

Doug
09-15-2009, 05:57 AM
Weggies? Hu! Two a penny!

(Not that I have ever met another one ;) )

(Walk your dogs in a Weggie hang-out, and you're sure to meet someone worth your time.... What did you say? Don't need no dang more stinkin hospitals!? Clinics ain't chic? Man, you got to lower your standards or you'll never meet another Weggie! 'Nuff said. Dang!):rolleyes:

Jack
09-15-2009, 06:44 AM
I'm obviously not hanging out in the right places, or do I need to wear some sort of sign? :rolleyes:

crackers
09-15-2009, 09:26 AM
just take your rabbit with you jack.that's a sure sign.
john.

Sangye
09-15-2009, 09:36 AM
And infect hordes of innocent people??? :D

crackers
09-15-2009, 10:45 AM
sangye we were all innocent.let's spread the lurrrrrrv.weggies are taking over.:D
john

Sangye
09-15-2009, 11:02 AM
Well, it'll sure make it easier to meet another Weggie, huh? Swine flu, move over. Here comes Wegener's!! :eek::eek: