An optimistic story

**brian willman** · 09-13-2009, 12:44 AM

In May 2008, after several months of mild tiredness, colds and stiffness, I became much more tired. I started to exercise less. As part of my work I was in the US and had a weekend in Manhattan feeling very strange - not quite there. In the following week, I started to get very tired and had agonising pain in the kidney area. Getting out of bed was a challenge.

Feeling terrible, I flew back from JFK. At one point, I dropped my pencil and I knew it was not worth trying to pick it up.

Back in London, my GP says it's viral arthritis and prescribes anti-inflammatories. This diagnosis will be repeated twice more in the next two weeks. I am told it isn't worth getting a chest x-ray.

I get weaker and cannot walk far. Mouth ulcers make it difficult to eat. I cough blood in the morning. Finally after vomitting blood and struggling to breathe, my wife insists that I go to A&E at my local hospital (Kingston) on a Saturday morning.

I have little memory of this but I know I was very scared as the Doctors did not know what the problem was. I said to my wife: "they are saying some very scarey things." They decide to keep me and I am wheeled away into oblivion.

I begin to become conscious again the following Friday. I am in intensive care in another hospital. Over the next few days, I find out what happened. I had declined very quickly and they had me on life support by Sunday. They still didn't know whether I had brought back a rare virus from my travels or whether it was auto immune. On Monday, they told my wife that they were not optimistic that I would live as my kidneys were failing and my lungs were haemorrhaging. She passed this onto our two teenage children.

On Tuesday, the diagnosis of Wegeners was made based on the Anca results. They then moved me to the other hospital in an ambulance with two police outriders. They began plasma exchange and kidney dialysis and I responded well.

After four distressing days in intensive care, I was moved onto another ward. I was very confused and weak but I made progress quickly and left hospital after ten more days.

All of my treatment was, and continues to be, on the NHS, hugely expensive but absolutely free and of great quality.

Since then, I have had some ups and downs but nothing serious. I had a minor flare earlier in the year. I am still on 12.5 mgs of Pred and 150 mls of Azapriothine. I was very lucky coming out with no serious consequences. I have worked almost full time since last September and feel very well and fit.

I know many people suffer horrible consequences from Wegeners but I am one of the lucky ones who is in good shape. I also understand perhaps better than some that life is very beautiful.

**Sangye** · 09-13-2009, 12:58 AM

That's a great story! Back to work in 4 months is amazing. I'm glad you're doing so well.

**Scott** · 09-13-2009, 02:02 AM

That's great! How are you feeling now? Any remaining damage?

**brian willman** · 09-13-2009, 02:14 AM

I feel very good. I need more sleep than I used to but then I'm 53!

I don't want to sound complacent - who knows what might happen.

Here's me playing in my band a few months ago. I know I've been lucky.

**Jack** · 09-13-2009, 02:25 AM

Sounds like you have had a lucky escape there! Most people who get to that stage (including myself) don't get away without quite a lot of permanent damage.
Hope you continue to improve!

**brian willman** · 09-13-2009, 02:31 AM

Is that true Jack? I simply don't know what the stats are.

I'm sorry you were not so lucky.

**Scott** · 09-13-2009, 03:44 AM

Great stuff - keep playing!

Are your lungs and kidneys pretty much "normal" now?

Doug · 09-13-2009, 05:07 AM

A great report, Brian! My story is similar to this (near death, aggressive care, good result), and I realize just how fortunate I am when I read other people's experiences with this disease. I should be dead. (And some probably wish I were!)

**Tony** · 09-13-2009, 07:06 AM

Hi Brian. My story is almost identical to yours, with the same timelines. Which hospitals were you in? I was initially in Tunbridge Wells hospital in June 08 where I was diagnosed, then ambulanced to intensive care at St Thomas, London, where I was given 5 sessions of plasmapherisis, pulsed 1000g of methylpred for 3 days and started on cyclophosphamide. Since Feb 09, I've been on 7.5mg pred and 7.5mg a week of methatrexate. Feeling great and have been in full time work since September 08 - really lucky, don't I know it. Also huge thanks to the NHS doctors at St Thomas, who could not have been better. My only obvious lasting damage is reynauds in the hands.