Another new (but similar) story

[Pmarsh]

Hello.

I was diagnosed with WG at the end of October, 2010. My story is pretty similar to many other. Chronic sinus issues, leading to other symptoms (joint pain, rash, coughing up blood - on my honeymoon of all times!), then a pneumonia diagnosis that didn't get better. Next thing I know I'm in the ICU with something called Wegener's. For me it mostly affected my sinuses, and then massive hemorrhaging in my lungs. I stated on the plasmaphoresis, high dose prednisone, and cytoxin treatments. Now I'm down to 7.5mg predinsone and have recently started on Imuran. I'm doing well. My latest ANCA results are near normal and all my symptoms are pretty much gone.

The reason I thought I would write in here is to share my approach. I haven't met or spoken with anyone else with WG, but read a few other stories on this forum. After I was diagnosed (and had some idea what WG was about) I decided that I was going to get better and get back to doing what I love. I'm very active. I'm a road cyclist and triathlete, and my work is often in remote mountainous environments. I didn't want to lose this lifestyle. One month after getting out of the hospital I went on my first ski tour (hiking a mountain on alpine skis). I was slow, but I did it. 3 days before my last Cytoxin infusion I climbed and skied a remote mountain in the Northwest Territories. Maybe not the smartest thing to do while on meds, but I felt good. Now it's bike season again. I'm trying to get some fitness back. It's a slow go, but I think I can get in better shape than before my diagnosis.

Many years ago I cycled across Canada (7000km) with a friend to raise money for Dyslexia (which my friend suffered from). I would consider another epic mission to raise awareness and funds for WG. It's certainly a complicated disease, and no one knows about it. My parents are GP's and they had to look it up. Perhaps this would be a good forum to spread the word about a WG fundraiser.

This is a little long-winded, but I wanted to introduce myself and share a positive story. I've learned a lot from this experience, but most of all, I've learned to appreciate good health and I plan on staying healthy.

Cheers!

[pberggren1]

Welcome fellow Cannuck.

[vdub]

Good for you! Sounds like you are doing great! Keep it up as long as you can. I think my situation is being somewhat impacted by no longer being young. I'm not ancient yet, but old enough to know what arthritis is. Stay active for as long as you can. Only 7 years ago I was running 5 miles a day. I would have trouble with that many blocks today.....

[Jack]

Yes, definitely do all you can while you can, but be careful not to overstress yourself. There is no way of predicting where Wegener's will take you over the years since it is not something that can be cured at present, but the hope is always that you can remain fit and well. I had 15 very good years when I was able to work and raise a family before things went downhill again. Unfortunately it is not necessarily a disease that responds to determination and a positive attitude, sometimes it just takes you where it wants to go.

[Chris G]

Welcome! And thanks for sharing your story. It's always nice to hear about someone who is doing well.

[Sangye]

Hi PMarsh, welcome to the group! It's amazing that you were able to recover so quickly. Count your blessings. Like Jack said, it's not just about your attitude. Many people are hit much harder with Wegs and/or complications and/or side effects of the drugs.

Maybe you can partner with Cindy, who is also doing very well physically and is also using her athletic abilities to spread awareness about Wegs. Search for "Everest" and you'll get her main thread. Her next adventure is underway and she needs help.

[marta]

Hey Pmarsh,

Welcome to this fine group of rare individuals.
I'm so picking up what you're putting down. I'm still new at this Wegener's game so I also have this hope of things getting back to normal. I bike (mountain and road) and ski (alpine, and x-country, and a few of backcountry trips), run, hike and do all the stuff that mountain life has to offer. Like you, and most people who live in my town, I'm a 'life-stylist'. I am so looking forward to getting back there. I think if it wasn't for my flare last fall (which I think got induced by the flu shot which had the H1N1 shot in it) I would be closer to where you are now. I'm working on getting there though. I've skied five times in the last week, and yesterday I spent all afternoon shreddin' it up. Bike season is coming up shortly (although it is slower coming this year) and my bikes are rearin' to go.

Brian (my hubby - who is a lot like you when it comes to physical activity) and I were talking last year about doing something epic to raise funds and awareness for WG. It was after he competed solo in the 24 Hours of Adrenaline, and we were thinking about organizing some killer bike ride to reach that goal. He just read your post to me and we started brainstorming again. So there, now you've got the bug in our heads again. Where are you from? Obviously somewhere up north. Keep in touch and we can scheme.

Here's to all of us living the life we want to live, and live it for a long time.

[drz]

It is great and inspiring to read about younger people with Wegener's who can realistically think about biking or dog sledding hundreds of miles. Us oldsters who can only think about maybe making a five block walk some day soon envy you, but we also get a great vicarious joy and satisfaction from your adventures and are cheering for you all the way. Go for it while you still can and enjoy the trip. Maybe some day, through your efforts, your recovery and life style will be the new norm for people with Wegs. We need more people like you.

[Pmarsh]

Thanks for all your positive comments. I certainly understand that this disease affects everyone differently. I'm fortunate to be diagnosed at a young age and have found good doctors to help me get better fast. I just hope I can stay healthy for a long time... and who knows what new knowledge will exist in 10-15 years.

Marta, sounds like we have similar ideas. Maybe we should brainstorm. I live in Vancouver. I will also look up Cindy and find out about her adventure.

It's nice to know there are others out there with the same condition. I know everyone will be at different stages as well. It wasn't too long ago that I was struggling to get up the stairs... only a few weeks after surfing in Hawaii. It's crazy.

Thanks!

[Geoff]

Hi Pmarsh,

Congratulations on giving Wegs a good clip round the ear. I shall follow your posts with keen interest.

Although I am much older than you (60 last Saurday) I was very fit for my age before I was diagnosed 3 years ago. I think that helped me considerably overcome my lung issues (similar to you) to the astonishment of the doctors.

All the very best of luck with your future 'Missions' and of course your new marriage!!