It feels nice to share:

[Orpheus]

Been lurking on these forums since Mayish (I signed up while I was still in the hospital) and been reading a lot of stories between now and then. I guess it is time to share my story to those who are interested.

For me things started to get really bad on Sunday May 10. I work on the weekends and my Saturday shift was brutal because I developed a nagging dry cough. Up until Saturday my only symptoms resembled a sinus infection that wouldn't go away (in fact I can pinpoint the exact day the symptoms started. On April 22nd I was awoken by an extreme nasal pain located right between the eyes). For 3 weeks I went to doctors including my family doctor, ER doctor (the pain was so bad I was not able to sleep) and a ENT, all of whom thought it was just a simple case of sinusitis.

On Sunday things started to get really, really bad. I was tired leading up to that point but I was able to force myself to get though the day. Sunday morning, not a chance and for the first time I had to call in sick to work. By Sunday evening I was bringing up blood and that's when I went to the hospital.

Getting to the hospital we (my mom drove me to the hospital) noticed it was PACKED, patients were even waiting outside. Not to jump ahead but 3 things saved my life that evening and this was the first one (side note, I had an appointment with my ENT doctor that Monday morning). I didn't want to stay because while I was coughing up blood I didn't feel at the time it was so bad but my mom insisted that since we were here that we step in and quickly see the trauma nurse. (I am Canadian, free medical care and all that so it wouldn't cost a thing just to step in and get a nurse opinion of the situation).

As I said before there were 3 things that saved my life that evening, the first was my mom insisting to see the nurse, the 2nd was the trauma nurse. Since I had an appointment with my ENT the following morning and with so many patients waiting in the ER I didn't think it was necessary to spend the entire night waiting to see the doctor when I was going to see one at 8am the following morning. The nurse too thought since I was seeing a doctor on Monday waiting around in the ER wasn't necessary, however, as I was getting up she quickly sat me down and said while I was here I should get my blood pressure checked. It was the first real sign something was wrong, my blood pressure was drastically low (during my whole ordeal I never once had a fever). Once she saw my blood pressure she had one more look at me, got up and went to talk to someone in the back, returned and I was immediately admitted and I saw a doctor 30min later and had my first chest xray 20min after seeing the doctor.

If I went home that evening I probably would have died either by drowning in my own blood (my lungs were filled of my own blood by Monday morning) or through kidney failure, the disease was hitting me that hard that fast Sunday. The ER doctor had no idea what was going on, my chest xray showed these HUGE white masses on both sides of my lungs and a huge unknown mass on the left upper side. Her best guess was what she called double pneumonia or possibly Tuberculosis, so I was sent to isolation were things got REALLY scary.

While in isolation I started bringing up buckets of this thick, dark red blood and I will never forget the shear terror in both the nurse and my dads eyes as both looked at me helplessly. The only thing the nurse could do was run around finding things for me vomit into (not to gross people out but I cannot over exaggerate just how much blood I brought up and how long I was vomitting).

It is now 2am Monday morning and the 3rd and final thing that saved my life will occur, I saw my doctor for the first time. He walked in, without a mask (remember people thought I had TB) and looked me right in the eyes and said "Mike, you don't have TB. I have seen this before, you most likely have a rare vascular disease called Wegeners. I am going to start treatment right away but we will not have confirmation of the disease for sometime." I was immediately taken to the ICU where I was given Prednisone and Procytox and thats when things started to get better. Monday afternoon I had my lungs drained of blood (they took over 1L out) and by Tuesday morning I started my first treatment of Plasmapheresis. Between Monday and Tuesday there were some close calls, I almost need a blood transfusion and was almost placed on dialysis. If that doctor was not on call, or if that doctor was not confident enough to begin treatment before getting a confirmation of diagnosis I would have most likely died.

It is now 3 months later and things are looking...better. I spent 16 days in the hospital (left May 26) and while I am not in remission yet disease wise things are looking really good. However, my body has/is taking a beating. Between the disease and the medication to treat the disease I have the following,

• Impaired kidney function (it is improving and I am up to 50% function with a creatin level of 150, norm is 100)
• DVT in my left leg that I am treating with warfarin (what is freaking me out, I may be on this medication for the rest of my life and I am only 30)
• Avascular necrosis in both knees
• Blown out ear drum - there is no nerve damage but I am pretty much deaf in my left ear

My lungs however have made a full recovery and the mass on my lung was not cancer.

So in a rather long nut shell that is my story. I moved back in with my parents and I am taking things day by day. The Prednisone is absolutely kicking my ass and I cannot wait to get off of it. I am down to only 15mg (started at 150 I believe in hospital) and my attitude is starting to return to normal. I started at 250mg of Procytox and am now down to 150mg, there was a scary 2 weeks where my WBC was less then 1 (he said .8, I don't know the units but the normal for a adult male is 4).

On a personal note the thing I am most scared of is relapsing. I now know what to look for but just how fast the disease almost killed me the first time I am very afraid. Right now the doctor told me if even I get a fever I should go right to ER and call/text him (both my vascular doctor and my family doctor gave me their cellphone number so I can reach them at anytime. While really nice it kind of freaks me out because it is a reminder of just how sick I am). Because of the Avascular necrosis I am bedridden, I should as much as possible stay off my legs (my friends bought me a Nintendo 3DS to keep me busy and the 3D is a lot of fun fyi) and I maybe bedridden for a long time because I will require surgery to repair the damage. And because I am on blood thinners and everything else that is going on with me the surgeon does not feel surgery is a good idea at this time.

Anyways thank-you for listening, I know it was a long read.