New to the party

[Runcolerun]

Hello!
My name is Cole, and I was diagnosed with WG in early May. I have been reading the posts, and registered and decided to post as well.

I'm sure my WG was present before things got serious, but I guess my symptoms started in mid-March.

I would find myself with nosebleeds everyday, with little success getting them to stop on my own. I dismissed them as seasonal allergies, which I usually come down with every year about that time.

About a week later, I went to my PCP with some mid back pain. As a runner and a cyclist, I figured it was something that I had done to myself, considering I had gone on a 40 mile bike ride a weekend prior. My PCP couldn't find anything wrong, and I was prescribed an anti-inflammatory, and given a prescription for physical therapy.

Naturally, the physical therapist couldn't find anything wrong either. I figured it was just a pulled muscle or something of that sort, and went about my routine. A few days later, I came down with a very dry cough. I figured I got sick from a co-worker that sits behind me.

On the morning of April 1st, I woke up about 3am and had a hard time catching my breath. After calling every urgent care facility in the Denver Metro area, I decided to go to the ER down the road from my house.

After some x-rays, my Pulmonologist suggested he intubate me, to allow me to rest and so they could diagnose the problem. From what I understand, after I was sedated and the tube was in, I started bleeding from the lungs. From what I'm told, I suffered atoreal hemorrhages in both my lungs, needed four units of blood and five plasma pharases treatments, and almost didn't make it.

My doctor said that had I not had strong lungs to begin with, (from my running and cycling,) had I waited 12 more hours, or had he not had a hunch that my illness might be WG, I probably would have "bottomed out." Crazy to think about, that everything lined up the way it did.

After two weeks in ICU, I turned a corner. I was kept in the hospital for an additional week, but when I was doing laps around the nurses station, they decided it was best for me to return home.

Luckily, we caught the WG before it hit my kidneys, and other than the lungs, I have very few symptoms. I'm on the cocktail of drugs, (200mg cytoxan, 20Mg prednisone, [down from 60mg when I was released from the ICU] Bactrium, etc. etc.)

Since then, After a few weeks at home and through some physical therapy, I was able to return to work full time, and I have been able to get back on my bike and start running again.

I'm working with a rheumatologist, and have been in contact with a nationally recognized lung hospital in downtown Denver, that sees WG patients from the Rocky Mountain region. Things are looking up, and my doctors say I have a strong chance of remission.

I just wanted to introduce myself, and thank you for keeping me informed while I learned about this thing.

[Thakator]

Hi Cole,
Yes, it's one hell of a party alright. Not to be antisocial but, for your sake, I wish you hadn't received your invitation to it. However, you have so welcome to the forum and may your path along this very torturous route be as smooth as possible. Ron

[NicShaf]

Hi Cole, welcome to the site! That is one heck of a story, but I'm glad to hear you're doing better. Best wishes for your recovery and remission.

[Pmarsh]

Hi Cole. Your story sounds really similar to mine. I had 8-10 month of sinus/nose bleed issues that I just thought was allergies or something that would clear on it's own. Then it went into my lungs in October last year. I had major bleeding in my lungs and ended up in the ICU for close to a week. I was a competitive cyclist and triathlete before, so I think my conditioning allowed me to wait longer than most would to go to the hospital but also helped me get better quickly.

I made a fairly steady and quick recover over the winter. Got back to work, started to get back in shape. Still managed 25 days on the skis. I've been dealing with a slight flare up this month, but haven't slowed down much. I'm back on IV Cytoxin (after an unsuccessful switch to Imuran) and 40mg of Pred. Managed a 45 mile bike ride the other day though. Hopefully you can get back to your activity soon too. I recommend just taking it slow and doing what your body tells you.

Take care.

[Sangye]

Hi Cole, glad to hear you got diagnosed and began treatment in time. It's great that you're back to work and active already.

[elephant]

Hi Cole, wow you went through alot. You were very lucky, and glad you are doing good.