February 2008

Best Film on Hemophilia

Tonight are the Academy Awards, and I am bound to watch the end to see if Daniel Day-Lewis wins Best Actor for his portrayal of a wildcatter in “There Will Be Blood.” The movie’s name could have aptly suited its rival, “No Country For Old Men” (which I think is the better film overall and should win Best Picture) with the amount of blood shed in it. But blood is something Hollywood and its fans feast on these days.

Blood is our domain, too. The Awards got me thinking of movies about hemophilia. And the first that came to mind is the spectacular “Nicholas and Alexandria,” the story of the last Tsar of Russia, whose son Alexis had hemophilia. Actor Michale Payton uncannily resembles the Tsar. The movie is based on the Pulitzer Prize winning book of the same name, whose author Robert Massie, has a son with hemophilia (who lived, oddly enough, about 2 miles from my house in 1987. I happily met him and confided his father was one of my favorite authors). The book is of course much better than the movie, but the movie does a tremendous job of bringing to the screen one of the most endearing love stories, most tragic leadership failures, and most climatic political outcomes of the 20th century. No spoilers here: everyone knows how the story ends. The royal family is gunned down and Lenin assumes control of the country, ushering in the Communist regime. The movie invites you into the intimacy of the royal family, reveals the sinister designs of the monk Rasputin, and relives the horrors of a world at war. As painful as watching little Alexis suffer is watching his father sign a document, renouncing the throne–300 years of Romanov rule ended–then turn and cry like a child.

It’s interesting that the movie opens with the birth of Alexis, the long awaited heir to the Romanov throne. But immediately the family, who knows hemophilia is a risk, sees signs of the disorder. I strongly encourage you to rent this movie through iTunes, or purchase it on Amazon to get an appreciation of historical hemophilia. Never before or since has Hollywood so carefully and beautifully made hemophilia the center of world events, or the center of such an epic film.

The Power of Alternative Medicine

On Saturday I drove down to Rhode Island to visit my friend Rich Pezzillo. Rich is a 24-year-old with hemophilia and inhibitors. One of the toughest cases I have ever seen. He’s had quite a year this past one. I wrote about him in my blog December 2006, when I visited him in the hospital. He was in excruciating pain then. It was very hard to be with him for three hours, because he was in constant, deep pain, apparently from his sciatic nerve. He is only a bit older than my son, so it was hard as a mother to see someone so sweet hurting and not be able to help. And Rich really is sweet, a great guy.

And so is his dad, Richard. I spent four hours interviewing Rich Jr. for my book on inhibitors and came away for a whole new appreciation of parents. Richard is a mechanic and small business owner, and father of three wonderful sons. Two have hemophilia, Anthony and Rich. But only Rich has inhibitors. What they’ve been through could fill a book. But I marveled at the father, and how devoted he is to his sons. Rich told me of the time when he was hospitalized in Vermont while at college, and his dad drove up from Rhode Island every other day to visit him. That’s a long ride, and a huge commitment when you own a business.

And when the doctors in Rhode Island informed Richard that his son would never walk, he refused to accept it. He was told the inhibitor bleeds had done too much damage to Rich’s nerves. Rich would always be wheelchair-bound. Through sheer desperation, Richard found a way, oddly enough, through karate. Anthony, despite having hemophilia, is a karate master. When he injured his shoulder, he was told by his fellow karate teammates to try a renowned acupuncturist in Haverhill, Massachusetts, about 15 minutes from where I live. When the visit cured Anthony’s injured shoulder, Richard convinced Rich, who put up a fight, to see him. They have gone weekly over the past year.

Now, I’ve seen Rich many times, at NHF meetings and at advisory board meetings we are both on: he is always in pain, and almost always in a wheelchair. On Saturday I had a shock. When I saw him, he was standing completely erect, relaxed, with no wheelchair in sight! I first thought “He’s so tall! When did he grow?” I never saw him at his full height! I was delighted. We chatted for four hours, with no interruptions of pain, as in the past. Richard is convinced it was the acupuncturist, who told him that all the wheelchair time had compressed a nerve. The nerve, overstimulated, didn’t know how to stop sending pain signals. With treatment, the nerve stopped, and Rich is much better.

It’s an amazing testament to the power of alternative medicines. I think I am going to check out this guy for my right shoulder. Too much scratch-pad movements while writing this book. And look for Rich at more hemophilia events. If he had high attendance while in dire pain, you can imagine how much he’ll get around now! Indeed, he said aloud how he couldn’t wait to go to Istanbul for the WFH meeting in May, after which we heard a shriek from his mother in the kitchen. Apparently he hadn’t told her!

Don’t Quit Your Day Job

I had a nice visit this week from a young man with hemophilia named Walter.  The way we met was strange. Last September I decided to rip up the carpet in my basement, which was in dire need of extermination, after years of pets and children had taken their toll. I hired a local flooring company to place lovely tiles that are immune to regurgitated dog food and ground up Doritos. One of the three young men tiling my floor asked me, “Does your son have hemophilia? Because I do.” He had seen photos on my basement walls of me with Paul Newman at Camp Hole in the Wall, and put two and two together. Here he was, on his knees all day, using really sharp cutting tools to tear up the carpet! We talked for a long time, and I sent him away with all kinds of books and newsletters, and told him to contact me if he ever needed anything. He only lives about three miles away.

So this week Walter did stop by. He quit his job. Walter, Walter! What were you thinking? I wailed. Now he has no insurance and no way to pay for factor. No unemployment checks, nothing. Walter also didn’t know what to do. He had never really been connected to the community.

My first thought was, don’t get any more factor sent you from your home care company. If his rep decides to send a quick shipment and does not check in first… Walt could be stuck with a bill he could never afford. Did he contact his home care company immediately to stop any more shipments? No. I made him promise to call that afternoon, so he will not accidentally get stuck with a big shipment that would eventually ruin his credit rating.

Did he tell his HTC? No. That would be his next call. Does he know what product he uses? Yes. And thankfully, his home care company enrolled him in a coupon program, so he has lots of coupons. Cash them in! He should get some free factor.

After talking, Walt saw his error. A person with hemophilia if at all possible should never just quit their job. So much preparation needs to be done first. At least we have lots of help in this community. From ACCESS to PSI, Walt has many resources to contact for advise and help. And as he walked out the door (I couldn’t tell if he was happy or sorry he came), I handed him this issue of PEN–“What To Do When You Lose Your Insurance.” The forlorn young man on the front could have been him.

Guys with hemophilia–don’t quit your day job. Tough it out for the sake of your health. Or I am coming to lecture you, too.

The “Bloody” Ring Tone

I’ve rediscovered ring tones. It happened last weekend at Kerry Fatula’s. She’s a fellow mom of a child with hemophilia. While chatting in the kitchen we heard a ring tone and everyone went silent, wondering whose cell phone it was. It was the dinosaur in “Jurassic Park III” (on TV), you know, the one who swallowed the cell phone and then… well, if you know the movie you will know the outcome. We all acknowledged that has to be the most famous ring tone in history.

Kerry and I thought it would be funny if she and I had our own ring tone. I’ve been using the odd little pings and rings provided by Apple, which are kind of lame. When I use them, I can hear a distinctive noise come on and know immediately who I do not want to answer. (Kerry is not one of those.)

So I though it would be fun if I selected ring tones for hemophilia situations. I logged on to iTunes and typed in “bleed.” Popular name for songs, apparently.

“Bleed“–Anna Nalick, Col, Puddle of Mud, Action Action, Angel Dust, Blitz, Collective Soul, Dear Leader, The Fade, Fat Jon and Styrofoam, Gary Numan, Floatsam and Jetsam, Further Seems Forever, Godhead, Ill Repute, Intuition, Joel Rush, Justin Manning, Matter, Michael Lord, NLX, No Man, Neil Zaza, Oxymoron, Shiloh, Sinch, Seize the Day, Scar’d Sanity, Sentenced, Smoke of Oldum, Soulfly, Vixen, Wumpscut. I am not making up these band names. I couldn’t be that creative.

There’s something for everyone, which is good because many of the songs are heavy metal and the lyrics aren’t so nice–apparently when they say “bleed” they are not referring to their own blood. But if these don’t strike your fancy, try these:

“Bleed it Out” –by Linkin Park
This is what happens when you don’t infuse fast enough.

“Bleed Alone”–Haste the Day
A good ring tone for all the single guys with hemophilia.

“Bleed and Blister”–Moneen
A ring tone for when you wear shoes that are too big.

“Bleed Black”–AFI
A ring tone for when you have an upper GI bleed?

“Bleed Forever”–Super Furry Animals
A ring tone for while we wait for a cure.

“Bleed from Within”— The Music
A ring tone for those prone to joint bleeds.

“Bleed Me an Ocean”— Acid Bath
A ring tone for when you forget your factor.

“Bleed Together”— Lovedrug
A ring tone for hemophilia camp!

“Bleed, Everyone’s Doing It”— Spill Canvas
Could be the ring tone theme song for all with hemophilia?

“Born to Bleed”— Dirty Sweet
A ring tone for those who inherited their hemophilia.

“Brother Bleed Brother”— Finch
A ring tone for your sibling.

“Let it Bleed”— The Rolling Stones
Not good advice, but you can’t get it in a ring tone anyway.

“Let it Bleed Again”— God or Julie
Still not good advice, which we don’t want to be reminded of in a ring tone.

“As I Bleed“– Bipolar
A ring tone for an infusion.

“Please Bleed”— Ben Harper and the Innocents
A ring tone for when you want to stay home from school.

“Punch Me I Bleed”— Children of Bodom
A ring tone for those who don’t have lifetime caps.

“Bloody Nose”— Earlimart
A ring tone for when you say the above to someone.

“Bleeding”— Ignite, Prom Kings, Todd Rundgren, Sixpence None the Richer, Five Finger Death Punch, Delerium, Sprung Monkey, Tiger Lillies [very weird], One King Down, Jacksom Rohm, Venom, Raindancer, Cord, Raunchy
A ring tone for when you first get diagnosed.

“Done Bleeding”— Sebastian Bach
A ring tone for those on prophy?

“Bloody Reunion”— Molly Hatchet
At last, a ring tone theme song for NHF meetings

“Through His Blood”— Bloody Sunday
A ring tone for grandchildren of those with hemophilia

“Only Women Bleed”— Alice Cooper
A ring tone for those, of course, who have VWD

“Bleeding”— F5
A ring tone for those with Owren’s disease (factor V deficiency)?

And my favorite… “You’re Bleeding” by NOFX, as in no factor X?

And what would I choose as a mother of someone with hemophilia? How about Slipknot? Yes, Slipknot. Those weird, carnival-faced, mutant KISS-like boys who like to scream. The song?

“Wait and Bleed.” Yikes.

Great Book I am Reading: Blood: An Epic History of Medicine and Commerce, by Douglas Starr. This book should be mandatory reading for anyone involved in the hemophilia community. I don’t know why I have waited this long to read it. Starr reveals the history of blood, as a source of fear and magical beliefs, and eventually blood as a commodity. In the latter half, the book focuses intensely on our community and the contamination of 10,000 of our own. At 400+ pages I will be reading this for a while, but it is already four stars out of four.

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