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andrew
05-18-2008, 12:35 PM
**Ian's story - relocated from the original site by Andrew**

I'm 50-years-old. I spent 71/2 months in hospital in 2005 after being diagnosed with Wegener's Granulomatosis. Prior to this I'd had good health all my life.

In October 2004 (aged 47) my hearing started to deteriorate so I went to my GP and arranged to have my ears "syringed". But, after this my hearing continued to go downhill. I was prescribed antibiotics. This dragged on and on as the GP tried various courses of different antibiotics but my hearing got progressively worse. My GP then referred me to the ENT specialist at the hospital. The appointment however wasn't until early February, 2005. My GP said that if I was a child, he'd be telling me that I had "glue ear"!

In the meantime, over Christmas 2004, my hearing became almost non-existent and my joints began to ache very very badly. It got so bad I couldn't get out of a chair without help and I could barely walk. I couldn't dress myself because of the pain. I also suffered at this time from "burning feet"! I couldn't put my feet on the ground without severe hot pain. I put all these symptons down to flu or something like that but it was really really painful to move at all and I maybe should have known that something more serious was happening. I took off ill from work mid-to-late January 2005 (as the pain was becoming unbearable) and as I was now almost deaf.

I went again to my GP. He arranged blood tests and called me a few days later (early February, 2005) asking me to come to the surgery immediately. The tests had shown very elevated ESR (105) and CRP (160) indicating severe inflammation - hence the aches in my joints. The GP told me he was admitting me to hospital immediately as he thought something was seriously wrong.

My wife and I went to "Accident & Emergency" with a letter from the GP (and the blood test results). I was seen there by a young doctor. Although I was almost deaf, had NOW also developed a terrible what I thought "head cold", could barely move with stiff joints, had the GP letter (including the blood test results showing rampant inflammation) asking for me to be admitted for further tests, and obviously so very very ill, he just gave me antibiotics. I told him that the GP had already tried these antibiotics - he didn't listen. He refused to admit me to hospital. He said that all the inflammation, joint pains etc was being caused by an ear infection and that I should come back the following day to ENT (as that's when the appointment my GP had originally made, was at last due) and to bring the letter from my GP and the blood test results to them. I was (naiively) so relieved that I wasn't going to have to be admitted to hospital at all and that ENT would (in the words of the A&E doctor) "sort me out"! The young A&E doctor then took a blood sample and said he would telephone us with the results. (He didn't - my wife rang the following week and was told that there were no concerns. We have since found out that the CRP had risen to 203 in that blood test).

Anyhow, next day at the ENT appointment, my wife gave the consultant the letter from my GP. He quickly glanced at it and then returned it to my wife with a "dismissive" comment, "that's nothing to do with me"! He told me that my sinuses were "all bunged up" and I "possibly" had fluid in my ears which may require surgery. He tested my hearing and just sent me home with MORE stronger antibiotics of the same given to me the previous day in A&E. A new ENT appointment was made for February 18, 2005 (2 weeks later!).

In those 2 weeks before February 18, my condition at home worsened. I was permanently in bed "and wanted to stay there". I had trouble breathing and any attempt at walking was terribly painful. I developed an horrendous cough and alarmingly, I began to bring up A LOT of blood and tissue (I thought that the blood and tissue was the result of trauma caused by the bad cough or something to do with my sinus problem that the ENT consultant had mentioned). I didn't realise what was actually happening and just thought there was nothing I could do as I had already been told on 2 consecutive days at the hospital that "nothing was seriously wrong with me". I thought that I would just have to be patient and wait for the next appointment with the ENT consultant on February 18.

Hindsight is a wonderful thing. Knowing what I know now, I don't understand why I was "abandoned" by the medical profession in those next 2 weeks. Why didn't my GP follow-up when he knew I hadn't been admitted to hospital with such serious symptoms? I was at home blissfully unaware of how dangerous my situation was. Why hadn't someone at least given me steroids for the rampant inflammation?

On that day (February 18) I could barely get into the car for my wife to drive me to the hospital. The same ENT consultant from 2 weeks previously examined me. He then called his superior who after examining me admitted me to the hospital immediately. He placed me in a private ward and did blood tests. I think he suspected Wegener's at this stage and presumably did an ANCA test. A nasal biopsy was also carried out and I was finally diagnosed with Wegener's Granulomatosis 5 days later. At that stage I had already told a doctor that if they didn't get me to intensive care immediately I was going to die as I was barely able to breathe and I was coughing up huge amounts of blood and lung tissue. They had already given me blood. I was transferred to ICU immediately. I was sedated as I was in a very bad way particularly with the trouble in breathing. I was unconscious for a month. I was on a ventilator and also on kidney dialysis. I only have one kidney since birth and this complicated things. I had tubes going into my body right, left and centre including a trachey and also a feed tube in my nose (had the trachey and feed tube for 5 months - horrible).

When I did wake up in ICU after a month, I was only able to move my head, I was TOTALLY PARALYSED and my legs were like twigs! I had lost 41/2 stones in weight.What a shock! All my muscles had wasted away (partly due to muscle suppressants I was given) and I was unable to speak because of the trachey. I had to communicate using a lettered and numbered board - someone would point to each letter and number and I would blink when they got to the correct one. This was so exhausting trying to communicate like this in my very weakened state. I couldn't even swallow (those muscles had gone too) resulting in the feed tube for 5 months - food by the feed tube and fluids by IV for 5 months - absolutely awful. The paralysis was very very scarey - took 6 months for me to even take a step again.

The disease had attacked my kidney, my right lung, my heart, my liver, my airways and my sinuses. And of course my joints. I had to have oxygen right up to about a month before leaving hospital. The subsequent physiotherapy was very painful even to just start moving my fingers again. My wife was told on at least three occasions to expect the worst. ICU staff called me "The Miracle Man" as I'd been so ill for so long and survived. I was in hospital for a total of 71/2 months - about half of this time (105 days) was 3 stays in ICU which included the initial treatment for Wegener's (high IV doses of Cyclophosphamide/Cytoxan and Prednisolone) and serious setbacks which included pneumonia, C-Diff and a clot on my lung - all of which almost killed me. I lost count of the number of blood transfusions I received! I went into "septic shock" at least twice -this was extremely dangerous in my condition and I was lucky to survive. I had both an oesophagogastroduodenoscopy (or OGD for short) and an endoscopy, almost daily chest X-rays, ultrasounds, ECG's etc etc. Because of my total immobility (due to the muscle wastage), I had to have anti-clotting injections in my stomach twice daily for the whole duaration of my hospital stay. My stomach was black and blue! Also, because of my total immobility, I didn't even see the inside of a bathroom for the whole time of my hospital stay. That needs no further explanation. What an ordeal!

I was finally discharged from hospital in a wheelchair at the end of September, 2005. At the time of writing (July 2007), I have been off Cyclophosphamide since March 2007. My Prednisolone is currently 5mg orally daily. I've finished with physiotheraphy and I'm slowly beginning to walk again with the aid of a walking-stick (cane). My problems include shortness of breath, lack of enery/stamina, weight gain because of the steroids/lack of mobility, and occasional nausea from the medication. However, I'm thankful for my recovery. My consultant said that I had been hit as hard by WG as anyone could have been and survive. I realise that things could have been much worse so I now cherish every day!


Ian