Hello - I'm Jonathan

[Jonathan]

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]

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]

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]

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]

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 Once that is going we can voice chat if you like.

What's telling you that WG is coming back?

[crackers]

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]

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]

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]

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....

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

[brian willman]

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.

Brian