From undiagnosed to climbing Mt. Everest!

[Cindy]

Hi Everyone,

Reaching Beyond the Clouds: Mt. Everest

For some time I had been experiencing a variety of unusual physical problems (i.e., in 2003, I had to have sinus surgery). However, the problem that concerned me most was my rapid loss of vision. I went to many medical specialists and had many tests preformed, but the cause of my symptoms remained a mystery. Setting aside the other physical problems, I focused on saving my vision. I believe I can handle just about anything, but I was terrified of going blind. Enter Dr. Holland of Jules Stein Eye Institute at UCLA: An amazing doctor who worked tirelessly to save my deteriorating vision. Dr. Holland diagnosed me with retinal vasculitis.

After watching an amazing Discovery Channel show called Everest: Beyond the Limit, I was drawn to climb that mountain: the beauty, the challenge. Please realize that at the time I had climbed only Mt. Kilimanjaro and was no mountaineer. So, at the age of 48, I was going to start training for a new adventure: mountain climbing. Subsequently, I contacted Scott Woolums, a very experience high-altitude guide, and we made arrangements to climb Mt. Aconcagua in Argentina (the highest mountain in South America) for our first training climb.

Then it happened! While shopping at a local nursery I was overcome with vertigo and realized I could not see out of my left eye: a retinal vascular occlusion. After reviewing test results, Dr. Holland and Dr. Kreiger (Jules Stein Eye Institute, UCLA) referred me Dr. Gorn a rheumatologist at UCLA Medical Center. On August 1st 2007 I was diagnosed with Limited Wegener's Granulomatosis. As shocking as that was: At least now I knew what I had and began a medication treatment program.

Two weeks later I was admitted to the emergency room having TransientIschemic Attacks (TIA - mini-stokes). OK, more medical tests and doctors check-ups: but I keep moving toward to goal of climbing Mt. Everest. As many of you know, the medication(s) to treat WG have side-effects and can make you very ill: which, for me, lasted for many months. I continued training – I have a mountain to climb!

Four months later, we went to Argentina and climbed Mt. Aconcagua. Unfortunately at 20,000 feet we had to abort our summit attempt due to very high winds. On the way down, around 19,000 feet, I snagged my boot on the other boot, fell, and broke my leg: but I still had to hike 5 hours down to base camp because we were too high for helicopter evacuation. Over the next 7 months I had a couple of surgeries (plate in/plate out) and continued on – I have a mountain to climb.

This past Summer, with the love and support of my wonderful husband of 18 years, we summited Mt. Rainier, 14, 410 ft; summated Mt. Elbrus, Russia, 18, 513 ft; climbed Peak Lenin, Kyrgyzstan, to 22, 500 ft, we had to abort summit due to team member getting frost bite.

Currently, I am in remission due to a continuous medication treatment. Fortunately and unfortunately, the medication suppresses my immune system thus putting me at a risk high infection. If I stop taking the medication, however, the disease can continue to damage my body. Most obviously, the disease is attacking my eyes and I am functionally blind in one eye, but (for now) we have saved my other eye.

I am a 50 year old female who teaches Health Science at California State University, Fullerton.

I leave for Kathmandu on April 1, 2010 for the 70 days it takes to prepare for and climb the South Side of Mt. Everest. The fact that I have Wegener's Granulomatosis does not change my drive to live life to its fullest and that is exactly what I plan to do!

For more on my story go to my climbing/fund-raising blog at
www.reachingbeyondtheclouds.com

I will be climbing to raise Rare Disease Awareness and money for the Vasculitis Foundation for research and support services.

[Doug]

Wow! What else is there to say? (Being me, however, I'll continue on, and on anyway!) Very inspirational. We emphasize a positive attitude on this site, and you exemplify it. I'll try to get on your blog again after I finish on this site. My computer is running slow today, so I probably will have to work on that first. Anyway, thanks for posting your story! I'm going back to the top again, it's so good! I hope you can post us from Nepal when you do the big climb, or at least tell us about it later.

[Cindy]

Hi Doug, Nice to meet you. I will be able to post from Everest base camp but only to my climbing blog. My hope is that I will get media attention during the climb so people will donate to the Vasculitis Foundation to raising money for research!

[Sangye]

Cindy, so you didn't have lung or kidney involvement?

[Cindy]

Sangye,
Well, I have blood in my urine (mild to moderate) but (so far) no lung involement. I have several issues with the WG stuff and taking the meds at extreme altitude is tricky but so far I have been able to stay on my training schedule: some days are better than others - as we all know.

[coffeelover]

Wow! Cindy,

I am impressed and inspired. I believe in your "live life to the fullest" statement, but I have not had the courage to venture to the levels you have. I am very impressed. Please keep us informed....for inspiration if nothing else.

Lisa Coffeelover

[Lightwarrior]

Cindy,
One of my best friends who is a medical librarian (every Nurse Scientist should be so lucky to have a medical librarian as a close friend) sent me an article written about your journey. Good luck, I'll be cheering for you!!

[elephant]

Cindy, I am screaming Yahoo!!!! Yippee! Stay strong, you are such and an inspiration.

[Sangye]

Cindy, what's the date of the big climb (I can't remember my own last name lately--LOL)? I hope you're doing well!

[Cindy]

I leave April 1st and will be gone 68 days to climb Everest. I can tell you how excited I am but it will be very difficult to be apart from my family for so long: not to mention climbing Mt. Everest.

I am doing well and training strong but my joints do bother me. During the climb I will be taking Napoxen which has worked in the past.

Two more articles are coming out in the next few days. AND I think I have found a great fund-raising method that the Vasculitis Foundation can set-up: It is similar to what the Red Cross is doing for Haiti: text in your donation! However, the set-up cost is $500 to the VF and they cannot afford that nor I (I still have a huge deposit due in a few days and more equipment to buy). If anyone knows of someone who might donation the set-up cost to the VF foundation let me know and I can put them in contact with the person (and it should be a tax deductible donation - I will check on that).