Uncategorized

Mountains Beyond Mountains

Laurie Kelley July 11, 2011

I broke in my new hiking boots on Mt. Washington, a 6,288 ft. deceptive mountain. It looks so harmless, yet is often rated one of the 10 most deadly climbs in the US. The strongest winds in the world were recorded at the top, at 281 mph. It sits at the confluence of three weather systems, and has a reputation for sudden changes in temperature, weather conditions and wind. You can start out at 80 degrees and sunny at the bottom, and within an hour hit snow, gale force winds and whiteout conditions.

I’m training for my Kilimanjaro climb August 6, trying to raise money for Save One Life, Inc., the nonprofit I started in 2000 to give financial aid through sponsorships to impoverished patients with hemophilia in developing countries. I have raised $140 so far, thanks to Barry Haarde, Cheryl D’Ambrosio and colleague and friend Michelle. This is my week to do some serious fundraising, so you may all be getting emails from me!

After reading about the treacherous weather, I wore summer clothes but packed winter gear in my backpacks, along with some survival items: matches, lighter, lots of protein bars, ponchos, waterproof coverings and layers of clothes. I drove 3 hours Saturday to the White Mountain range, stayed overnight and started at 8 am this morning. All smiles.

Within 15 minutes I was breaking a sweat and laboring with my breathing. This was way tougher than I had ever imagined! The trail is all rock—big rocks that make footing tricky. It’s not a lovely dirt trail under the pines; it’s rocky, rough and all uphill. Viciously up hill. I kept looking at my watch: 8:30, pant pant. 9 am, pant pant. I stopped over and over to guzzle water.

I found three slimy slugs on the rocks, really misplaced and in danger of being stepped on, and like the animal-lover I am, coaxed the creepy things on to a leaf and then relocated them off the trail, where they were safe. By 9:30 slug saving was no longer part of the morning. I had to save myself. My heart was about to explode out of my chest wall. I was drinking my water so fast I feared I’d have none left for the half way mark, where there was a pump.

With my calf muscles burning, I pushed on. Finally at 10:30 am I had made it to the half way point, where there was a cabin and yes, a water pump. The view was beautiful. The strenuous climb left me with no appetite. All I craved was water.

I set off again, once my heart settled down to a normal beat, this time feeling much better.

One of the guides told me that they get sunny, clear days about one day per month. Today was that day! The sky was crisply blue and there were no clouds. So this was the mountain that has taken 146 lives, and puts fear into climbers’ hearts? It seemed so peaceful today and all the hikers I met were in awe over the great weather.

The second half of the trip saw me leaving the woods, and entering a more barren terrain. Our path was called Tuckerman’s Ravine and I hiked right through the ravine. Suddenly it seemed almost impossible to push on. The steep grade made gravity like a huge magnet, pulling me down. My heart was pounding wildly. I had to stop every tenth step and breathe deeply over and over to calm it.

The trail turned into just a huge pile of rocks from millennia past. I focused so much on putting one foot in front of the other, that I lost the pseudo-trail twice. There are very faded yellow markers on the rocks (AMC should really repaint these!) but these are hard to see. Rocks and boulders everywhere and at times, you think you are just stumbling over the world’s biggest rock pile, going who knows where.

Eventually I came to the heart of the ravine, where miraculously, on a summer day, was a snow bridge—a huge sheath of snow suspended over the ravine! A blond-haired man, fit and daring, stood under the bridge while his girlfriend took his picture. I couldn’t bear to watch; I didn’t want to see this guy on 1,000 Ways to Die. The climbing was really tough and even the young people we met were struggling. I think this part was the hardest of the whole climb. At times we were going hand to foot, crawling vertically like Spider-Man.

Finally, around 11:45, I could see the summit, and those coming down gave us an encouraging “Just about 45 more minutes! You can do it!” Mt. Washington is like one of those crazy optical illusions: you think you are getting closer, but the closer you get, the further away it seems! By this time I was leaning on my trekking poles, gasping. Once I caught my breath, I pushed on.

It took me another 15 minutes or so but I made it. Really, I had no choice but to make it! There were lots of cars and tourists, as Mt. Washington has an Auto Road, and many drive their cars up winding, hairpin turns, 11 miles to the summit. I literally dragged myself across the parking lot… only to climb more stairs to get to the restaurant, gift shop and reservations for a van ride down. I have never breathed so hard in all my life.

But, having said all that, it was a fantastic experience! I learned so much about myself and what I need to know for Kilimanjaro.

Trekking poles are a must. They provided balance, and something to lean on when breathing hard.
If you can’t eat, an energy gel snack gave an instant boost while being easy to digest.
I don’t think you can drink too much water!
Good hiking boots are vital. Mine kept our ankles protected form sudden twists from slipping on rocks or stepping into little crevices.
Warm jackets; the wind picked up at the top and once I stopped sweating it got chilly!
Climb with someone, not alone. Especially at my age!

I need to hike more often. So, despite how tough this was, I will return probably next weekend, if the weather is good.

http://www.saveonelife.net/mt-kilimanjaro-climb.php
Please help support Save One Life’s Kilimanjaro fundraiser! Make a donation via PayPal in my name as a climber. Each climber pays for 100% of their trip to Kilimanjaro. 100% of your donation goes to our Africa programs and to Save One Life! My goal? Raise $5,000 to give towards college scholarships to young men with hemophilia in Africa, to help them pay for medical expenses and transportation. Please give today!

(Mountains Beyond Mountains is the name of a top-notch book by Tracy Kidder about Dr. Paul Farmer’s humanitarian work with TB and AIDS in Africa and Haiti. Read it! You’ll be amazed.)

This Time for Africa!

Laurie Kelley July 3, 2011

One month from today I will be in Africa, about to reach new heights, literally. I’m planning a huge mountain climb, up Mt. Kilimanjaro, the largest mountain in Africa and largest freestanding mountain in the world. At 19,340 feet, it’s colossal. We will start at tropical temperatures, and gradually progress up to Arctic temperatures, below freezing. It will take us six days: five up and one down!

Who are we? The nine other climbers are: my 17-year-old daughter; Eric Hill and son Alex; Neil Herson and daughters Britney and Kelly; Jeff Salantai, who has hemophilia, and Julie Winton, a nurse with a son with VWD. Jeff and I just met for the first time last week in San Antonio! He was the first person with hemophilia to climb Mt. Rainier last year!

Eric is president and founder of BioRx, a specialty pharmacy. Jeff and Julie are his employees. Neil is president and founder of ASD Healthcare, one of the largest distributors of plasma derived products and pharmaceuticals in the US.

Our goal is to raise money for Save One Life and its Africa programs. Save One Life is the child sponsorship program for impoverished children with bleeding disorders in developing countries. I’ve been traveling to Africa since 1999, and was the first person from our international community to travel to Kenya, Ghana and Tanzania. I’ve also been to Zimbabwe four times and hope to return again soon. We started outreach programs in Tanzania and Zimbabwe to help locate more patients. We also want to start a scholarship program for college age men in Kenya. They are all so lacking in funds, and it doesn’t take much to get them an education. Once they are educated, they have a chance at a better life.

Eric is a sponsor of two children through Save One Life Neil is one of our biggest sponsors at 49 children! Obviously they are deeply committed to our cause.

They must be to tackle Kilimanjaro. Long the focus of lore and legend, Kili is very special. And tough. While not a technical climb, meaning there will be no ropes or climbing gear, it is strenuous. The biggest worry is altitude sickness: migraine headaches that lead to vomiting and lack of appetite. Oxygen levels will be at 50% of sea level.

But I have hope. Chris Bombardier, a young man from Colorado, just returned from Kenya and I think is the very first American with hemophilia to summit Kili! His climb also raised money for Save One Life.

If you’d like to sponsor a climber, please go to our donation page. Please note that 100% of your donation goes to Save One Life and its African programs, and not to cover the costs of the climb, or airfare or anything related to the trip. Each climber pays for his or her own expenses. All funds raised are donated to Save One Life. It’s a huge commitment in terms of time, energy, and money for these climbers. Please give them motivation and support by pledging today!

http://www.saveonelife.net/mt-kilimanjaro-climb.phpa

Interesting Book I Just Read
Break on Through: The Life and Death of Jim Morrison by James Riordan and Jerry Prochnicky

Shaman or madman? Forty year ago today Jim Morrison died of “heart failure” in a bathtub in Paris, of a suspected overdose. His death is being honored around the world by tens of thousands who loved his music and somehow identified with this tortured poet-turned-rock star. It’s hard to see the poet when you read the account here which can make you wince: the drinking, the juvenile antics, destruction of property and disregard for the rights of others, including his own band mates who suffered six long years with their front man. Gifted with a gorgeous voice and even better looks, Morrison relished the role of star, but also sought solitude personally, and respect for his poetry. “The Lizard King” brought the Doors fame and a legacy in rock and roll history, but as much for pushing the envelope as for his lyrics. His on stage antics made him the first rock star to be arrested on stage; he had 20 paternity suits pending at the time of his death; he was banned forever in Phoenix. Now his antics look tame, but in the 60s, this was all new, and dangerous. Morrison took rock where it had never gone before.

Riordan was a Rolling Stone contributor, and interviewed Morrison. But the writing is choppy, perhaps reflecting two different authors’ styles, and references to current events—Vietnam, Charles Manson, Apollo 11—are stuck in the middle of the story, often without a connection, or when there is a connection, it’s contrived. Some of the statements are just ridiculous (No matter how he tried to avoid it, legal trouble followed Morrison [as though he were an innocent bystander] and then in the next paragraph, they relate how he was arrested by the FBI and held in jail for disturbing the staff and passengers on a commercial plane ride). The attempt to view Morrison as a shaman is a bit too serious, verging on hero-worship. Much of the material here seems to be pinched from other sources, though sources are often not cited. So this is not a well written or researched book, certainly not as good as No One Here Gets Out Alive. I prefer drummer John Densmore’s Riders on the Storm the best, for its candid and sympathetic view of a man, Jim Morrison, who vented his deep-seated angers at his audiences, and muted his insecurities through alcohol. What a waste: judging from the Celebrations of the Lizard today, he is still cherished as a star, marveled at for being truly innovative, and listened to with pleasure. He appalled and attracted. The world is ever fascinated by him. Morrison has influenced many rock stars since his brief life ended. And members of the Doors are still touring, as much as ever (I almost went to see Ray Manzarek when he was in Massachusetts in May–so sorry I missed it!) He always said he would be a comet: a brilliant flash, here for a short while, but leaving a lasting impression. How true! RIP, Lizard King. Two stars.

POTR is Hot in San Antonio!

Laurie Kelley June 28, 2011

Insurance is still the hottest subject in bleeding disorders, and this past weekend in San Antonio really proved it. We had a great turn out for “Pulse on the Road,” our unique symposium, sponsored by Baxter Healthcare Corporation, that is completely devoted to educating patients about insurance reform. As guests of the Texas Central Hemophilia Association and Lone Star Chapter of NHF, we presented a three-hour symposium on Sunday, June 26, from 7 am to 10 am, to an audience of over 200 patients and their families.

The chapters did an excellent job of attracting patients and families to attend. With hundreds of family members and a fair amount of industry representatives, this was a stellar meeting. I loved seeing the children with hemophilia scampering about, or holding relay races in the hallways as part of the supervised kids’ programs. No joint problems anywhere!

While a nutritious, hot breakfast was served, I started the session Sunday morning with an overview of hemophilia’s history and how our unique history has been placed high on the radar screen of insurance companies and state governments. My talk was followed by Elizabeth Stoltz of Baxter Healthcare, who gave an Insurance 101 session; her talk covered common terms that all families will need to know to navigate healthcare reform. Then, Michelle Rice of NHF presented the results of a patient-focused survey from last fall, which tested to see how much bleeding disorder patients knew about their insurance and insurance reform. Results were encouraging, as high numbers knew that lifetime maximums were being eliminated and that dependents would be able to stay on their parents’ insurance until age 26.

Finally Jim Romano of Patient Services, Incorporated (PSI) gave the keynote about healthcare reform. Breaking down the many changes into digestible amounts, Jim covered how the new healthcare reform will help us, and what we need to monitor to ensure we continue to have access to the care we need.

To spice things up and keep our audience sharp at such an early hour, I asked the audience after each presenter a question, and whoever got the right answer won cash! The message: we are trying to educate to keep the cash in your wallets. If you don’t know much about your own insurance policy, you may overpay. If you don’t know how insurance reform will impact you, you may lose money. In these economic times, we want every family to preserve their hard-earned dollars. The “competition” added some fun to the topic of insurance and we had some sharp people in the audience!

Following the speakers we had three breakout sessions on Medicaid, Out of Pocket Costs and Advocacy. Everyone agreed that 45 minutes for break out was not enough. These interactive and informal gatherings proved the highlight of the meeting. Patients were able to ask questions about their personal situation with experts in their field. Jim Passamano, of Sufian & Passamano LLP, a lawyer specializing in chronic disorder and insurance, helped explain Medicaid changes to many families. Shannon Brown, a social worker from Texas, spelled out certain out of pocket costs that patients will need to monitor closely. And Michelle Rice of NHF presented a new personal tool to help families get a handle on comparing insurance plans.

Simultaneous translation into Spanish helped the many Spanish-speaking families understand how healthcare reform may impact them.
Patients truly appreciated the three-hour program and the chance to speak to insurance experts in bleeding disorders. “I would like to have attended all the [break out] sessions and not just one!” commented one attendee. “I’m very pleased at how much I learned and all the wonderful people I met!” exclaimed another. When asked if they learned something new, every hand in the room was raised!

Thanks to Luis and Shannon, executive directors of their chapters, and coordinators of the event, for inviting us, and to Baxter Healthcare Corporation for their sponsorship.

Visit our website (“Events”) to see where we take Pulse on the Road next!

Visit our website to download your complimentary copy of Pulse, our newsletter devoted to insurance reform for the bleeding disorder community.

Interesting Book I Just Read
Altitude Illness: Prevention & Treatment
Stephen-Bezruchka, MD
This is a small book, written to be taken while trekking on mid- to high-altitude mountains. I read most of it on one plane ride. It’s chock full of good information, and goes into great (and scary) detail of what can happen to you if you are not careful on the mountains. It’s very dry, terse, to the point, and may make you think twice about attempting the big ones. Too late for me! I am going to tackle Mt. Kilimanjaro in August. The strange thing about altitude sickness is you just never know who it will strike. Marathoners and top athletes, like Martina Navratilova, can get it, and 12 year olds with limited climbing experience may avoid it. You never know till you are there. Two stars.

Leeches: A Treatment of Hemophilia

Laurie Kelley June 20, 2011

This is an amazing account sent to me by my colleague and the president of Hemophilia of North Carolina, Richard Atwood. Richard is a regular PEN contributor. This article is about…. leeches. Not for the faint of heart.

In 1839, Mr. R. Liston at University College Hospital in London, England reported on a case of hereditary hemorrhagic diathesis. His patient, S.P., was a 32-year-old farmer with temperate habits. He was a large man, strong and healthy, with a smooth, fair complexion, dark-grey eyes, dark hair, and sandy whiskers. S.P. reported having lost alarming quantities of blood from extraction of teeth; he was treated with pressure and cautery. At age 19, he had a small wart cut from his hip; he lost so much blood that he fainted and was debilitated for several days. The family history revealed that his maternal grandfather and 6 brothers were also affected with the same peculiarity of constitution.

In February 1839, S.P. fell and hurt his back and loins. Several days later he experienced sudden pain in his left groin, with pain in his left thigh down to his knee. A surgeon examined the subsequent swelling in the groin and ordered leeches. After 2 leeches were applied, the resulting hemorrhage could not be suppressed. The mass in the left groin was about the size of the patient’s fist, similar to a hernia. S.P. was admitted to University College Hospital on March 8, 1839. The abscess was opened with the potassa fusa resulting in slight bleeding. This blood was examined under microscope and found to be deficient of fibrine and in a bad state, containing a proportion of globules characteristic of pus. The patient was discharged… cured.

In 1840, David Burnes MD of Bloomsbury Square, in London, England reported on hemorrhagic diathesis in 3 brothers: 44-year-old William, 30-year-old Charles, and 25-year-old John. In addition, 2 maternal uncles had a tendency to bleed easily, while their mother, 4 sisters, and 3 other brothers, all over 20 years, did not develop this peculiarity.

In July, 1939, William was seized with inflammation of the testis. The usual remedies were ordered including 4 leeches to the scrotum. This treatment removed the disease, but blood continued to ooze from the leech-bites for several days to the point of debilitation. After spontaneous coagulation of the blood over the wounds, William improved much in about 28 days. He then pushed his hand through a pane of glass while opening the window and cut his thumb on the outer side. The free bleeding from the wound was temporarily arrested with adhesive straps until the inflammation of the hand required their removal. The subsequent freely oozing blood continued in spite of the use of styptics, pressure on the radial artery, and ligature. The irritable, greatly debilitated, and almost blanched patient was kept in bed and starved! The treatment of digitalis, ipecacuanha, and nitrate of potash was ordered, along with keeping the wound constantly wet with a lotion of spirit and muriate of ammonia. After a clot formed, the wound healed 24 days from the accident.

Charles, who had a slender frame and great muscular strength, presented in March 1837 for symptoms of enteritis. Charles stated that he and other family members bled easily and declined being bled from the arm. Instead, 6 leeches were applied over the pain on the left side of the umbilicus. This treatment instantly arrested his disease, but blood continued to ooze for 8 days from the leech wounds. After a vexatious confinement to bed caused more by the remedy than the disease, Charles recovered.

While out shooting in October 1827, John fell from his horse and sustained a severe injury to his arm. The day after his biceps were swollen and exceedingly inflamed and his forearm was bruised from elbow to wrist. An order was made for 12 leeches with bleeding encouraged by warm fomentations along with aperients and other medicines. The hemorrhage could not be stopped by pressure, alum, flour, or cobwebs, until nitras argenti was applied. John had constant oozing of blood over several days and subsequently died from loss of blood.

Dr. Burnes noted that hemorrhagic diathesis is hereditary and peculiar to males. He corroborated the opinion that hemorrhagic diathesis arose from a deficiency in the contractile power of the arteries, though he mentioned that the blood seemed less disposed to coagulate and appeared to be mixed with water.

And why leeches? Leeches were used for every kind of ailment during this time in medical history. They certainly didn’t stop bleeding; while attached, leeches secrete hirudin to prevent coagulation of the blood!

References:

Burnes D
1840 Haemorrhagic diathesis Lancet ii:404-406.
Liston R
1839 Haemorrhagic idiosyncrasy. Lancet i:137-8.

Great Book I Just Read
The Johnstown Flood by David McCullough [Kindle edition]

The Johnstown Flood is usually a sidebar and two paragraphs in a high school history book. McCullough, our nation’s master storyteller of American history, makes this a page-turning, electrifying account of the Katrina of the 1880s. You will gasp and may cry while reading this. McCullough at once has given an accurate account, written like a novel, and serves as a memorial. The South Fork Dam served to create an aquatic playground for the super rich of Philadelphia, and despite warnings of the lack of an overflow drain, and various weak spots, nothing was done. Townspeople who lived below the dam often wondered and worried, but no one ever believed anything could possibly go wrong. Then it rained… like the Deluge. And the consequences were as dire. On May 31, 1889, the weakened, earth-made, South Fork Dam burst, and pounded and shredded everything in its path. Trees, dirt, horses, fences, barbed wire gathered like a wall of destruction, hell-bent for Johnstown, its denizens unaware of the horror about to be. Over 2,000 lost their lives in the most horrific ways; entire families of hard working people died. When it was over, grief turned to anger at the rich, at the paparazzi that came to gawk. This is a fascinating story, gut-wrenching and masterfully told. Read it. And take the time to read all the names at the end of those who died. Four stars.

Healthcare Reform in Action: Wisconsin

Laurie Kelley June 12, 2011

I spent the weekend in Wisconsin Dells, Wisconsin, at the Great Lakes Hemophilia Foundation annual meeting. On Saturday we presented “Pulse on the Road,” which brings our annual newsletter about healthcare insurance reform live to hemophilia families across the country.

We had a wonderful turnout: Karin Daniels and her team really deserve a round of applause for the hard work that went behind this!

We opened the morning with a look at how our hemophilia community has changed through the past 15 years concerning product, pricing and reimbursement, and how we stand now. Insurance companies, “payers,” once reluctant to touch hemophilia, though it was increasingly an expensive disorder to treat, eventually overcame hesitancy when the increase in healthcare costs forced both payers and state health programs to scrutinize hemophilia products.

Elizabeth Stoltz of Baxter presented “Insurance 101,” and reviewed key terms and concepts that everyone needs to know to navigate the new landscape of hemophilia healthcare reform.

Ruthlyn Noel, policy manager with the NHF, presented survey results from the 2010 patient survey about healthcare. The good news is that all our efforts to educate the public is working: between 80-90% of respondents knew that lifetime limits had been removed and that children can stay on their parents’ insurance plans until age 26.

Finally, Jim Romano of PSI presented Healthcare Reform, now called “The Affordable Care Act,” and how it will impact hemophilia. While most of the action starts in 2014, there are many things we all need to know to prepare for the many changes. Jim talked about the central issue, mandated insurance, and how the government will assist in getting coverage, from “exchanges” to state tax credits to expanding Medicaid.

After a short break we had three breaks out sessions, on advocacy, out-of-pocket costs, and Medicaid. Families really enjoyed the informal and one-to-one attention from the speakers.

Then we reconvened to have an open Q&A: this was a great tie for families to present their personal concerns or general questions. One question concerned hospitals: what do parents do when they bring their child in to the emergency room and are forced to buy the hospital factor? One father shared that his one hospital visit was $100,000! Clearly his factor was marked up 400% or higher. He received great advice about why this might happen, and how to prevent it from happening again.

After the program, families had more sessions by local speakers and HTC staff. After dinner, they had the opportunity to visit the water park. It was a wonderful weekend, filled with information and fun!

Great Book I Just Read
The Worlds of a Maasai Warrior by Tepilit Ole Saitoti
This fascinating book is told by a man who grew up in the 1960s as a Maasai, the tribe that dominates eastern Tanzania and Kenya. Nomads to this day, they live in tightly knit families, and family life focuses on the rearing of cows, as currency, as food source, as their future. The Maasai are known for their colorful red clothing, and are proud of their warriors, who are initiated into manhood by a circumcision ritual and ability to spear a lion in self-defense. Tepilit had a remarkable life: growing up on the African Serengeti in complete simplicity but at one with nature. When his father sends him to a Christian school to be educated, he is introduced to new universe, and his life becomes one vast adventure that eventually lands him in Hollywood and the central character in a National Geographic movie. The book beautifully describes Maasai life, and then will make you smile or laugh out loud with Tepilit’s charmingly naive descriptions of his first automobile ride, plane ride, and impression of New York City. I met a 20-year-old Maasai warrior last year in Kenya, and chatted with him about his life. He easily walks three days in the utterly dangerous savanna, armed with only a spear and knife. He told me, “Anything I need, the earth provides.” I have great respect for the Maasai and truly enjoyed this autobiography. Three stars.