Training for Mt. Everest Update

[Cindy]

I just returned home from several days of training on Mt. Hood, Or.
Each day that goes by is bringing me closer to reaching my goal of climbing Mt. Everest! I wish someone else with WG could join me on the climb - it could be quite an event.

[Sangye]

LOL...Not me! I could barely climb on to the exam table at the doc's today.

I'd probably get down the mountain at record speed, though. Nice round pred bodies roll fast.

[andrew]

I'd love to, really but I can't afford it......

and I'd need about ten years of training....

and a leave pass from the Mrs...

It would truly be a great adventure. To be able to get to the top of the world would be the most incredible experience.

[Cindy]

Sangye, I turned down the steroids meds and it (so far) has worked for me - I am sooooooooooo lucky!
Andrew, I cannot afford it - pulling my retirement to do it but why not . . . . I mean life is an adventure and I am going to follow its path . . where ever it leads me. Also my hubby has been a jewel He has been so amazingly supportive even though he is very worried: but he is allowing me to follow my dream - what more could one ask for in a support system I have the best life!

[Cindy]

Oh, and anyone who could join me can make the trip to Everest base camp: much cheaper and about two weeks ($4000 + $500 + airfare) - I used Frequent flyer miles for my ticket. That would be so amazing if we could get a Team WG to Everest Base Camp! It might rock the world to show healthy people what WE CAN DO!
P.S. I do not mean to down play people who are very very ill with WG. The six weeks before my Mt. Aconcagua climb, I was very ill, but I just pushed through it (although I did break my leg on the way down - minor details). Really, I want to draw attention to our situation! Please bare with me and my goal - it is truly amazing that at this point in my life (everything concerned) I have a real chance of standing on top of the World holding a Rare Disease Awareness banner!

[Sangye]

Cindy, you've been really lucky that refusing pred has worked for you--for a good number of Weggies with active disease that would be a death sentence. Refusing the steroids would have killed me twice by now. When it comes to hemorrhaging lungs, there are no alternatives to using steroids.

Fortunately I was able to be off them for about 2.5 yrs, and should be able to be off them again once the rituxan kicks in. But they've done serious damage to me that may never be corrected. Many Weggies can never get off them without triggering a flare. It's awful.

[andrew]

Hmmm....did a quick check to see what high-altitude trainign I could do in Australia. Our highest peak is at a smidge over 2200m. A bit too 'short'. You have sparked my imagination though. It would be something I'd love to do, even if it is just to one of the first couple of base camps.

[elephant]

Andrew, go for it! Any challenge that you accomplish will bring you joy!

[Sangye]

Andrew, you should definitely give it a try if you can!

[Cindy]

Sangye,
Yes I did take a gamble by refusing steroids: I did a lot of research weighting out the benefits vs risks. My doctor was a bit surprised but I feel that I have to be in control of this thing and I do not have any lung involvement. I had a flare before going on the medication and one right after starting it, but none since. I still have positive ANCA but (from all signs) I seem to be stable.