Sunday, August 26, 2007
Bayer unveiled a new website last month, called www.LivingWithHemophilia.com, and Susan Zappa, RN and I are featured as their first "Ask the Experts." I am focusing on insurance, but was asked just about everything else, too! From FXIII deficiency transmission, to the use of ice, to what to do with unused supplies, it's been an interesting first month.
Check out the site. It is bright, colorful, interactive, easy to navigate and very user-friendly for hemophilia families. And ask me a question quick, before I'm replaced by the next expert! In our community, there are a lot of experts--return each month to see who they are.
There are also a lot of new products and services for families in the offing by many companies, and I hope to continue to showcase some of them here.
Quite a few of you responded to my note about Tommy and his earache, and subsequent ER headache-- please feel free to post your comments, too, so everyone can read them. To those who asked--he's doing fine. One reason he panicked so much is that he plans to have a career as a sound/recording engineer, and he thought he was seeing his career go down the eustachian tubes. But he's fine, back home for the weekend, and giving me the extreme pleasure of doing his laundry. Thanks to everyone who asked about his health!
Sunday, August 19, 2007
Typical London tourists, my daughters and I went to the "London Dungeon," a popular tourist attraction, last Monday, on our last day in England. This dark and eerie theater/museum/thrill ride production walks you through medieval London and its various horrors of the time, from the Bubonic plague, to Jack the Ripper, to standard methods of imprisonment and torture. Not for the faint-hearted. Indeed, Tara left after 5 minutes! Mary gripped my hand throughout, and was amazed to learn that Jack the Ripper's last victim was--Mary Kelly. Overall, the Dungeon was well done, theatrical, scary and even educational. And fun--I was selected from the crowd to take the stand in a medieval court, presided over by a judge in a powdered wig. Before I could be accused of anything, the moment the judge learned I was from America, he cried "Guilty!", much to everyone's amusement.
I took particular interest in the section on "Sweeney Todd," the fictitious 19th century barber and serial killer, who was said to cut his victim's throats, and even use the victims' bodies to make meat pies. Despite this lurid account, Mary learned something new--in the Middle Ages, barbers also performed surgery. I pointed out to her the barber pole. Did you ever wonder what the barber pole stood for?
The barber pole developed as a symbol of "bloodletting," a standard treatment for just about anything. During this treatment, the barber would drain blood from the patient in the hopes that it would somehow cure the patient of whatever was making them ill. (You can see a decent portrayal of it in the 1995 movie "Sense and Sensibility") The patient would grasp a pole to make veins stand out, the barber-surgeon would cut, and blood would pour into a basin. Afterward, blood-soaked bandages would be hung outside as advertisement. Twirled by the wind, they would form a red and white spiral pattern that was later adopted for painted poles. Later on, the bandages would be replaced by a wooden pole, with painted red and white stripes. Variations of the barber pole appeared in different countries, with some alternating a blue stripe with the red.
I guess I find anything to do with the history of blood--and hemophilia--interesting; London is certainly steeped in history of hemophilia, as mention of Queen Victoria, the most famous carrier of hemophilia and longest reigning monarch, is everywhere. And while the barber pole is recognized around the world, its days could be numbered. The William Marvy Company is the sole remaining manufacturer of barber poles in North America, and one web site notes that in recent years, the sale of spinning barber poles has dropped, because of fewer new barber shops and municipal restrictions on moving signs. You may have to visit the London Dungeon to get a glimpse of one someday!
(Photo: Mary's revenge: Off with their heads!)
Sunday, August 12, 2007
Please enjoy the photos while we are on holiday in England (home of the most famous carrier of hemophilia, Queen Victoria) this week!
(Photos: Laurie with "Jerry Springer" from Madame Tussaud's Wax Museum; Parliament with "Big Ben"; Tower Bridge)
Posted by Laurie Kelley at 11:57 AM
Sunday, August 05, 2007
This weekend we had a perfect example of transitioning-- the stage when your child with hemophilia becomes an adult, responsbile for his own care, health and problem-solving. Tommy moved out the week I was in California (nothing personal) and everything went well. Kevin helped him get settled into an apartment in Lowell, and he has been in and out of home, moving furniture, checking in and still working at the local pizza shop. Friday night he stopped by but had a pained look on his face; his ear was really hurting him. (I love how he still comes to tell me!) He has a history of infections, and sure enough, from what I could see, the inside was dark, blocked and leaking fluid.
We discussed options: too late to go to his primary care physician. He could wait till morning and go to the ER or stick it out till Monday. Blue Cross/Blue Shield of Massachusett doesn't make it compelling to go to your primary care. The ER co-pay is only $5 more for a visit. So off he went to the ER first thing Saturday morning. (The pain must have been bad to rouse him out of bed before 11 am) This would be his first trip by himself.
Later in the day he came into my bedroom again, this time with tears rimming his eyes. What happened? He gave the admitting nurse basic information about himself; she noted aloud that he had hemophilia. Soon he went in and yes, he had a whopping infection. The attending physician decided to unplug the ear and gently lanced the infection. It hurt a lot, and it bled. Tommy said, "You do know I have hemophilia?" No, she didn't. Somehow the information from the admitting desk never made it to the attending physician. Or if it did, she never looked at his admitting papers. That was enough lancing for one day.
It is hard for us as parents not to say, "You need to tell everyone all the time in the hospital you have hemophilia; never assume anything!" So hard, in fact, that we did say it. Kevin added, "Even if you did tell the attending physician, she may not even know what hemophilia means practically." Yikes. All these years of hospital visits, and I feel sometimes like we're back at square one. But there was a bright spot, besides Tommy getting good care, antibiotics and Tylenol. He infused himself immediately after the ER visit, showing us that he has at last transitioned out of a denial stage and into young adulthood. It gave us a deep breath of reassurance as he sets off for college.