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The Hemophiliac Who Got High

Laurie Kelley September 7, 2009

Not that kind of high, but really high, like Mt. Ranier high. Jeff Salantai, who has hemophilia, and Eric Hill, president and founder of BioRx, a home care company, undertook the grueling challenge of climbing Mt. Rainier, in order to raise funds for two nonprofits—one of them mine!

Mt. Rainier is the tallest glaciated mountain in the lower 49 states–only Alaska has one higher. It is located just outside of Ashford, Washington. Jeff is an account manager for BioRx and lives in Austin, Texas. Eric writes, “After more than 7 months of training and preparation, we attempted to summit the mountain the second week of August. We received tons of thoughts and prayers from many of you and we just wanted to say thank you to everyone who called or wrote wishing us luck. We summited the mountain at 7:20 am on Saturday, August 15, at 14,410 feet….so wiped out we could barely function (only to realize we had about 7 more hours of continuous trekking to get back down) but we did it.”

Most amazingly, is that Eric has pledged to match funds with anyone who wants to donate for their climb, for Save One Life, my nonprofit that sponsors over 500 children with hemophilia in developing countries.

Both men agreed that this is was the hardest thing they’ve ever done. Eric writes, “I’ve run a marathon, done 4 more 23 mile runs, completed 5 Olympic length triathlons, climbed 2 other 14,000 ft mountains (no glaciers) and raced in 100k road bike races. Jeff likewise has done some pretty spectacular physical challenges like climbing the second and third largest mountains in the US, rock climbed some amazing cliffs, and has competed in 100 mile bike races on a routine basis. We both agreed that they all paled in comparison to the effort and mental trial of this experience.”

Incredibly, they are “99% sure” that Jeff is the first person living with hemophilia to summit Mt. Rainier. Jeff may now hold the record for the highest summit in the world by someone with hemophilia.

Their donations are so needed. I am visiting countries that no one in the hemophilia community has visited before and we are hoping to do outreach to find the people with hemophilia, who are as yet unidentified and suffering in silence. Please help, and show your support for the tremendous and risky fundraiser that Eric and Jeff undertook. I have never heard of any fundraiser quite like theirs!

Jeff and Eric write, “Thanks to everyone for everything you’ve done and the support you’ve provided to both of us.”

Congratulations to Jeff and Eric, two courageous and determined men with hearts of gold.

Bobby Massie Cured

Laurie Kelley August 24, 2009

The Massie family is about as close as the US has ever come to having a royal hemophilia family. Robert Massie Sr is a Pulitzer Prize winning author, famous for his books Nicholas and Alexandra and Peter the Great. He began writing about Russian royalty while working as an editor for Newsweek, after the birth of his son Bobby, who was born in 1956 with hemophilia. Suzanne Massie is also an author, mostly on Russian culture and history, such as The Land of the Firebird (of which I own an autographed copy). They are both fabulous writers.

But it was their joint book Journey which sent shock waves to the world. For the first time, hemophilia was documented in all its detailed pathos. Both parents write in alternating chapters: he focusing on the scientific aspects mostly, she on the emotional aspects. It makes for a gut wrenching, blistering page-turner; a roller coaster of emotions at a time when there was no factor concentrate. The Massies were propelled to stardom following the release of Nicholas and Alexandra, which was later made into a movie. There were movie premiers, evenings with celebrities like Stephen Stills, Oscar de la Renta, and dinner at the White House.I was a huge fan of Robert K. Massie by age 25, even before my own child with hemophilia was born. Call it weird, fate or whatever, but there I was, in labor in the fall of 1987, reading Peter the Great while waiting for my child to be born. When my child was hospitalized later and the bleeding wouldn’t stop, I suddenly recalled my mother’s words from a few years ago, when she gave me the book as a Christmas gift: “The author writes about Russian history because his own son has hemophilia.” Little did I know Bobby Massie lived only two miles from my house at the time, Through our treatment center nurse, I was introduced to someone whose whole family I admired. Bobby and I met, and I found him very down to earth, intelligent, and above all stoic. He was suffering from not only hemophilia, but HIV and hep C. I later became friends with his mother, who worked with me to help kids with hemophilia in Russia, something she had been doing for some time. Suzanne became such an expert on all things Russian, that President Ronald Regan relied on her as an advisor for Russian policy, and she welcomed him to Russia, to the Pavlosk Palace, which she had helped to renovate. Remarkable family!

Bobby is also well known in Massachusetts for running for public office: he made history in 1994 by becoming the first person in the US to have HIV to run for Lieutenant Governor. He ran with Mark Roosevelt, a descendant of Teddy Roosevelt. And now I just read over the weekend that Bobby has been cured of hemophilia. How? A liver transplant on July 10. If you never heard of this, factor VIII is produced in the liver. Transplanting a liver from someone without hemophilia will give you a liver that makes factor VIII. It’s only for life and death emergencies, though. The risks of it being rejected are too high, as are the risks of bleeding. Bobby needed it as his liver had been failing.And true to his family heritage, he did it while making history. In a 10 hour surgery, he received a liver from someone who was receiving a liver from someone else… at the same time! A side by side liver transplant. This is called Domino Surgery, and this was performed at Emory University in Georgia.We wish Bobby a good recovery! Journey, a marvelous book about hemophilia in the 80s and 70s, is out of print. There are limited copies available on Amazon, and eBay. It’s worth reading.

Book I am Reading The Shack by William Young

I bought this at an airport and though being a best seller, i’s just not my style, I guess; I could not get past the first few chapters. I skimmed through later the plot thesis: little daughter is murdered while family is on vacation (murdered in the shack), father Mack loses his faith, father receives a letter from God one day asking Mack to have a chat with him in the shack. Mack, who had turned skeptic, blindly says “Ok, sure, because maybe the letter is from God” and so on. So I stopped there; I guess I will miss the unfolding plot about how God is an overweight Chinese woman, Jesus is a lumberjack and I don’t even know what character the Holy Spirit was… maybe the postman? Dan Dick, ordained minister of The United Methodist Church, writes: “The Shack is a spiritual Twinkie – sugary sweet with little or no nutritional value. The fantasy tale is very unevenly told, but framed as a might-have-happened second-person narrative. The spiritually naïve and immature might find this to be a deeply satisfying treat. Without a sound theological basis or the application of even the most basic critical thinking skills, a reader might mistake this as more than just a fairy tale.” I won’t rate it given I didn’t read it it and will add that someone I know and respect very much read this, was moved about the message of forgiveness and subsequently reached out to a family member long lost and repaired a relationship. In that regard, this book has great value! It just wasn’t my spiritual cup of tea.

Arizona Highways

Laurie Kelley July 27, 2009

I’m on vacation this week in Arizona, till Saturday, when I will give a presentation to the Hemophilia Association, Inc. (Arizona) in Phoenix. Until then, I’m enjoying the beautiful, breath-taking sights of Sedona and the Grand Canyon.I’ve done a lot in two days: jeep ride through the back country of Sedona; hot air balloon ride at 5 am this morning over Sedona, hiking through Oak Creek Canyon, visiting the Sinagua Indian ruins called “Montezuma’s Castle.” This is one of my top three favorite states; the history of the earth is permanently etched in the buttes and mesas. Sedona is known for its electromagnetic activity and has attracted all sorts of psychics and vortex seekers, spiritual advisors and healers. Fascinating! Tomorrow I have a helicopter ride through the Grand Canyon.

Till next Sunday!

Saving Elephants in Florida

Laurie Kelley July 18, 2009

I had an experience on Saturday that really speaks to this community and its dedication. For some strange reason, I was reminded of a scene from Animal Planet in which a baby African elephant was stuck in some mud. Her entire herd, including her mother, rallied around the calf to assist her until she was freed. Naturalists were amazed by how communal and compassionate elephants are.

So a 30-year-old man, not a baby elephant, called my cell phone at 10 am Saturday. “Jack” has mild hemophilia and has never self-infused. He also has no insurance and was in the middle of a raging psoas bleed. My son has had those and they are excruciating. I felt for him. I could not ship him donated factor through Project SHARE. The best I could do was to provide numbers: PSI, ACCESS, Hemophilia Hotline (Do you have those numbers handy??). He went to an HTC on Friday (his first time, I think) and was given some free factor, but not enough to last him a full week. Worse of all, there he was at home, still bleeding, and he needed an infusion that day. And he didn’t know what to do.

No way would I coach him over the phone on that. So I called some friends, and fellow “elephant” mothers: Natalie, long time friend, on one side of Florida; Linda, executive director of the Florida Hemophilia Association, another long time friend, closer to where the young man was located; Kim Madeiros, executive director of Factor Foundation of America, also close to where he lives. What happened was amazing!

Natalie took my call and wanted to help, but was too far away. Kim returned my call– from the beach. She was out having fun with her son and her 14-month-old daughter. No matter. Bleeding patients come first. I could hear the roar of the waves as she spoke, her children squealing in the background. And Linda called. She works now for Walgreens, and so could not infuse Jack, even though she has a 26-year-old son with hemophilia and lives close by. But, her brother lives only 10 minutes from where Jack lives and he is a doctor. Problem solved! Our hemophilia herd rallied around this man, and within one hour we had located a way for him to avoid the ER and get an infusion.

For Jack, this was the wake-up call of a lifetime. Talk about stuck in the mud. I can understand how those with mild hemophilia can go their childhood never learning to infuse. They bleed so infrequently that it’s not practical sometimes to teach them. But as these guys age, their past catches up with them. Jack confided that he had some joint problems. We know now that even one bad joint bleed can set us on the road to arthritis.

So Jack knows he has to make a plan: register with the Floria hemophilia organization; visit an HTC, not just any hematologist; learn how to self infuse; get newsletters and books and read about hemophilia; meet some of his community brothers with hemophilia; and find a way to solve his insurance problem. You just cannot be without insurance if you have hemophilia! Even if it means going on Medicaid. Fortunately, there are many programs to get help in our community.

Jack was lucky, but I wonder how many other young men in our country have hemophilia and who live on the fringe, not aware of the community around them. They are like baby elephants with no herd to care for them. I am proud of Natalie, Linda and Kim, who went out of their way to help, and thank them for showing so much compassion and dedication. These traits are what make our community as special as it is. And sorry for referring to you ladies as elephants; you know what I mean.

Book I Just Read: The Cure, by Timothy Brantley

“The Cure” alludes to us as self-healing organisms: “You are the cause, you are the cure.” Nothing here is new… at all. Brantley (who is not an MD, though he has “Dr.” in front of his name, as in PhD, obviously trying to lure us into thinking he is an MD) has consolidated material from Harvey and Marilyn Diamond, who had a great book in the 70s called Fit for Life (four stars!), from Pamela Secure’s Three Day Fast, from John Robbins’s Diet for a New America… ground-breaking books published years ago which already laid out his principles, which are not new or earth-shattering. Drink water. Avoid table salt. Consume mostly fresh foods. Stop eating pastries, bread, sugar, colas. Chew your food more. Drink water. See what I mean? Nothing original. He himself has a compelling story: his father was an exterminator, and his mother eventually died of cancer, leaving him determined to unlock mysteries of cancer and illness as they relate to our diet. Problem is, people have already done that. He’s endorsed by several Hollywood stars (hmmm, no doctors? No nutritionists?) and appears on TV talk shows. Why not? He’s handsome and hip. But original? Naw. Strangest of all, after spending 90% of the book telling us to eat food as “Creation” made them, he promotes his herbal pills and concoctions by asking you many, many times to visit his website, which is at least 2 years out of date. If you have never read any book on diet and illness, you might like this and I think what he says is true. But I’ve read better. One star.

Risk vs Reward

Laurie Kelley July 13, 2009

It was a perfect day in Massachusetts– for skydiving! Today I jumped out, as they say, of a “perfectly good airplane” at 14,000 feet. On the way up, one of my friends couldn’t buckle up in the car as one of the seat belts was broken. This got me thinking about risk, our perception of risk, and reward. Most people would never go skydiving. They consider it dangerous, although your chances of dying in a car crash (from not wearing your seat belt) are much higher. Most people are shocked that I love to skydive, and not only that, that I encourage others as well.

For me, the rewards outweighed any perceived risk. Our perception of risk often determines our decisions. And things seem riskier 1) if we are not familiar personally with it–most people don’t ever skydive, 2) if it is sensational– and one skydive death makes the news, even while several car accidents will be overlooked, 3) if there is feeling of lack of control. We often “feel” more in control of our cars, and feel less likely to die in them.

This is my fourth jump.

There are about 3 million jumps in a typical year in the US, and about 30 deaths. This is about one person per 100,000 jumps. One website says “You would have to jump 17 times per year for your risk of dying in a skydiving accident to equal your risk of dying in a car accident if you drive 10,000 miles per year.” So odds are good you’ll be fine!

So what’s all this got to do with hemophilia? Some people are still very insecure about infusing factor concentrate. We are writing up a big article for the August issue of PEN about recombinant and plasma-derived factor concentrates. There are risks with any medication, and of course we had sensational deaths with hemophilia many years ago. This has made many fearful of products. But all US products are considered safe by the US FDA. These are among the most scrutinized drugs on earth, and we run a higher health risk eating at a fast food restaurant than infusing factor.

Sometimes it all has to do with perception. My perception of skydiving? The rewards far outweigh the risks. I feel the same about factor concentrate, too. Read the August issue of PEN to learn more about safety of our products, and if you ever want to shake up your world, get on the edge, have an adventure, try skydiving!

“Life is a daring adventure, or is is nothing at all.” Helen Keller