From Undiagnosed to Climbing Mt. Everest and Running the Iditarod
For some time I had been experiencing a variety of unusual and unexplainable physical problems. I went to many medical specialists and had many tests preformed, but the cause of my symptoms remained a mystery. The problem that concerned me most was my rapid loss of vision. Setting aside the other physical issues, 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 and began treating my eyes. During that time, I watched an amazing Discovery Channel show called Everest: Beyond the Limit, I became 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 experienced 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 1, 2007 I was diagnosed with Wegener’s Granulomatosis (WG), a rare, incurable, and potentially life-threatening disease. As shocking as that was: At least now I knew what I had and began a medication treatment program. The medication(s) to treat WG have side-effects and can make you very ill: which, for me, lasted for many months. I am now functionally blind in one eye but I continue training – I have a mountain to climb! Then again: another flare! Two weeks later I was admitted to the emergency room having Transient Ischemic Attacks (TIA – mini-stokes). Okay, more medical tests and doctor appointments: but I keep focused on my goal of climbing Mt. Everest. 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 (I am pigeon-toed), fell, and broke my leg: but I hiked for 5 hours down to base camp and was helicopter evacuated off the mountain the next day. Over the next 7 months I had a couple of surgeries (plate in/plate out) and I continued on – I have a mountain to climb. Most people who attempt to climb Mt. Everest train for many, many years, but I did not know how much time I had so if I was going to attempt this climb, I had do it as soon as possible. With the love and support of my wonderful husband of 19 years, we put everything else on hold and put all of our time and resources toward my goal – I had to climb as many mountains as I could in a short amount of time. In the Summer of 2009, we summited Mt. Rainier (14, 410 ft); summited Mt. Elbrus in Russia (18, 513 ft); climbed Peak Lenin in Kyrgyzstan to about 22, 500 ft but we had to abort summit due to a team member getting frost bite. These were all training climbing preparing me to climb Mt. Everest in Spring 2010: but now I was out of money for more big climbs. So, I continued to train locally on Mt. Baldy (10,036 ft). My condition has been stabilized by the medication treatment program. Fortunately and unfortunately, the medication suppresses my immune system thus putting me at a high risk for 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. Thirty million Americans have rare diseases and before my climb I became an advocate to raise rare disease awareness for the National Organization of Rare Disorders (NORD) and the Vasculitis Foundation. I left for Kathmandu on April 1, 2010 for the 68 days it takes to prepare for and climb the South Side of Mt. Everest. The fact that I have Wegener’s Granulomatosis did not change my drive to live life to its fullest and that is exactly what I plan to do!
UPDATE: After fifty-one days of working my way up the mountain, on May 23, 2010, I stood on the top of the world holding the NORD Banner and became the 40th America female to summit Mt. Everest.
My Book: In the following months, I wrote and published Reaching Beyond the Clouds: From Undiagnosed to Climbing Mt. Everest. For information about the book, look under the My Book menu tab.
From the summit of Mt. Everest to running in the Alaskan Iditarod Sled Dog Race: As I continue on my journey to raise rare disease awareness, my next extreme challenge is to complete this 1000-mile race. For details, look under Updates, the Iditarod menu tabs, and you can follow my progress on the Iditarod blog.
UPDATE: On March 22, 2015, after 13 days, 11 hours, 19 minutes, and 51 seconds, I crossed under the burled arch in Nome and completed the Iditarod. What an incredibly difficult but rewarding experience – to travel 1000 miles across the Alaskan wilderness with my team of amazing canine athletes. And I finally got the NORD (National Organization of Rare Disorders) banner that I held on the summit of Mt. Everest under the burled arch in Nome! I received the Wells Fargo Red Lantern for Perseverance, and I am the only female who has both summit Mt. Everest and completed the Iditarod.
Documentary Film is now available: In an effort to bring rare disease awareness to new heights, my husband and I have produced a full-length documentary film of my journey: Banner on the Moon. After 5 years of work, it is now available for On Demand viewing. Information can be found under the Documentary menu tab.