[QUOTE=Mattieus;113550]Hello, I've visited here previously but now I decided to share my story and join the forum.

I was 32 at the time of my diagnosis, something that came as a total surprise to me, as I imagine it was too many of you. I had been having some intermittent sinus issues, join pains and such. I saw an ENT and had my tonsils removed due to large white patches and constant sickness. Having those removed at 31 years old is no fun at all.

Anyway, before October of last year (2017), I was dealing with a mystery cough that wouldn't go away. It seemed to be getting worse, and it started to feel like I wasn't able to take full breaths. One morning I coughed up a large blotchy blob of phlegm that contained a lot of blood. I was worried by this, so I took a picture. I showed my wife who immediately said, "Yeah go to the hospital". I went to the urgent care close to my office, and she prescribed me doxycycline telling me that it should resolve within a few days. It got worse despite the meds and I called my GP, who advised me to go to the UC by my house. There, they took a chest X-ray and found that I had pnuemonia. They put me on levaquin and advised that I call them should I experience any joint pain. Fast forward a few days and my wife, 2 year old son and I are at dinner. We eat our food, and as we go to leave I can't stand. My knees hurt so bad that I couldn't walk to the car. I force myself to hobble to the passenger seat of my car and ask my wife to drive. We get home, I take pain meds and lay down. After calling that Doc the next day, she tells me to discontinue the levaquin and drink lots of water to flush the meds out of me. After a day or so of unrelenting pain (this is just before Thanksgiving at this point) my GP asks to see me. She says I've probably developed tendon damage from to the levaquin and refers me to an orthopedist and orders another chest x-ray to see the progress. I get it and it's gotten much worse. My GP tells me to go be admitted to the hospital. Once there they put me on strong IV antibiotics and I am still coughing, and coughing up blood. I then notice that my urine has changed to a dark apple cider like color and it smells bad. (Sorry, I don't mean to be graphic or gross). The doc says that it's most likely from the IVs, and says I've improved and should spend Thanksgiving at home with my family. They discharge me Wed evening. I spend most of Thanksgiving asleep, and I am exceedingly weak. I get up Friday PM and don't feel right. I haven't eaten in about 24 hours so I try and eat, but I just can't force it down.

I wake up at like 2am Saturday morning and feel like I'm drunk. I can't breathe and can't see straight. I stumble to the floor, get as dressed as I can, tell my wife that I'm leaving and after getting no more than a groan, I crawl to the garage and my car. I get in, turn the air on as high as it would go and sit there trying to catch my breath. Finally I do, I leave and head to the ER/Same hospital I was just in which is 6 minutes away. Upon leaving I call the ER to tell them that I'm coming and that I can't walk. They meet me at my car with a wheelchair and take me inside. They immediately take me back and start an IV. I keep passing out and they put me in the ICU as my O2 sats are in the 70s. My wife arrives in the morning (Saturday AM) and the doc tells her they don't really know what is going on. Fast forward to Sunday evening and they tell me I'm not improving and my chest x-ray shows 90% blockage. They choose to transport me to the specialized ICU about 15 miles away. That load me up in an ambulance, call my wife and away we go.

I remember getting there vaguely, and seeing the doctor. They tell me they need to intubate me because forced O2 isn't helping me. I tell my wife I love her, the doctor says "see you in a few hours" and they put me under.

I wake up confused, having no idea what as going on. I can't speak, something is in my throat. I can't move, maybe I'm restrained? I see a nurse and hear some beeping and odd noises. From the right of the room, I see my wife walk to me. She tells me not to talk, that I have a trach in. She tells me not to freak out, but it's been 4 weeks. I've been in a coma for that long as they figured out what was wrong. She then tells me that I have Wegners, I went into renal failure and respritory failure, my heart stopped twice and that they had to put me on ECMO as a last ditch effort to save me. Then she tells me I can't move because I have been on such high doses of meds and that I have atrophied so much. I had been on plasmapheresis, four doses of Rituxan, and had multiple transfusions, along with being placed in a proning bed while being on life support. I really didn't know what to say.

After I stabilized, they took me out of the ICU, and I went to inpatient rehab just after Christmas. I went in as a Max assist (where you cannot do anything for yourself). After 15 days of 3-4 hours a day of PT/OT, I walked out of the hospital on Jan 10th. I then went home and started my recovery. Jan 28th I went back to work and continued outpatient rehab until mid March.

As of now, my GPA is under control. My blood tests have shown no PR3 markers. When I was first in the ICU, my PR3 was 328 which is insanely high. I am currently on methotrexate, folic acid and will have another dose of Rituxan in a few weeks as it has been about 6 months since all of this happened. Unfortunately for me, I have developed severe rheumatoid arthritis like symptoms. My rhuemotologist says that can happen and we just have to deal with it as it comes. Thankfully I am alive though. So that's the important part.

So that's my story. So hello everyone![/QUOTE


Welcome! I am new here, as well. But, have already benefited greatly from information & support. My Husband is the one with Wegener’s. So, I would encourage your wife to visit the forum. As you have already learned, having connections to others fighting a similar fight, can be encouraging, uplifting & cathartic. Prayers for continued improvement!
Lynette