Blog Archive

Sunday, December 28, 2008

Infusion Redux

It's the holiday season and as all moms of kids with hemophilia know instinctively, bleeds seem to happen more around the holidays. True? Well, maybe we don't have hard data, but so many parents have told me through the years that many holidays were postponed, or spent in the hospital, or at home resting. Parties were cut short and travel plans cancelled. I know we had many memories of showing up after the Thanksgiving feast was already eaten, or after the presents were opened.

Maybe it's the sugar (doctors tell me no); maybe the parents are more distracted and less focused in protecting their child; or maybe it's the excitement, which leads to more activity, which then leads to bumps, bruises, and bang ups.

Or, maybe it's just luck.

I was lucky yesterday. I got to infuse my 21-year-old son. When do I ever get that privilege anymore?

And I was scared to death!

Tommy was home for the holidays. We had an uneventful Christmas, and a nice day after. Yesterday we were to go visit my mom in Springfield, about two hours away. He awoke in pain, and complained of a shoulder bleed. It's funny how some things never change, even though he is an adult, and doesn't live with us anymore. I immediately suspected he was exaggerating the bleed [read: fibbing) so he wouldn't have to go visit his grandmother. After all, he was out till all hours the night before. Being the kind, sympathetic mother I am, I told him to take some factor, Tylenol and rest on the car ride out.

Ouch!

He objected rudely and eventually I could see he wasn't exaggerating. Shoulder bleeds are very painful. As we made our way downstairs, I offered to get the factor. He asked if I would infuse him. I suddenly realized it has been a long, l-o-n-g time since I have infused anyone. I actually got the butterflies in the stomach I used to get when I first learned to infuse him!

To make matters worse, all I had was factor 18 months out of date that someone had sent me to hopefully bring to the developing world. Tommy had not brought any factor with him; he thought we had some here already. The expired factor had been refrigerated, but, well, it was pretty expired. And, it used a needle transfer device that I am not familiar with. At all.

So this was not funny: I have a grouchy, hurting 21 year old in front of me, and I am hemming and hawing, trying to figure out how to get the stupid diluent into the bottle! I actually found myself forgetting steps: alcohol wipes! Oh, jeez, the tape! Tommy had to remind me to undo the tourniquet lest I explode his vein. What do I do again with the little bit of factor left in the tubing?

I was really, really glad when it was over. How the heck did I manage to do this when he was two?

I called my mom, who ended up coming to visit us--with five active great-grandchildren.

What a wake up call for me: you really lose your skills when you don't use them. And I don't live with hemophilia anymore. And there aren't enough holidays in the year to bank on bleeds when Tommy comes to visit. If he comes to visit.

He recovered. That same night, he was back out with his buddies all night. And I was left holding the needle and syringe, wondering what to do with it: we don't have a sharps container in the house.

I learned that: expired products are still effective; don't forget to undo the tourniquet; and if it's a holiday with a trip to grandma's, count on a bleed. Just don't count on me to know how to infuse!


Note: To see a patient from the Philippines with a shoulder bleed, go to my first YouTube movie:

http://www.youtube.com/watch?v=AtOWlX5s_Oc

Sunday, December 21, 2008

Happy holidays!

We wish all our friends and colleagues everywhere this week a very merry Christmas and Happy Hanukkah!



Monday, December 15, 2008

Do They Know It's Christmas?


With Christmas coming, we always play a long iPod list of holiday songs. Our tastes run from traditional ones, like Bing Crosby's "White Christmas," Perry Como's "O Holy Night" and Johnny Mathis' "Christmas Song," to Queen's "Thank God It's Christmas," Elvis' "Why Can't Every Day Be Like Christmas?", Run DMC's "Christmas in Hollis," and Sting's "Gabriel's Message." But Kevin and I agree that our favorite is "Do They Know It's Christmas?" by Band-Aid.

You might recall this was a song written and recorded in 1984 by several top English and Irish recording artists to help raise money for famine relief in Africa. "The record was released on November 29, and went straight to No. 1 in the UK singles chart, outselling all the other records in the chart put together. It became the fastest- selling single of all time in the UK, selling a million copies in the first week alone. It stayed at No. 1 for five weeks, selling over three million copies and becoming easily the biggest-selling single of all time in the UK," notes Wikepedia. The video can be seen on YouTube.

It's a timeless song, about the timeless plight many African countries face. I think of it now as we try to help our hemophilia brothers in Zimbabwe, a country collapsing under economic duress. This is a beautiful country, filled with civil and peace-loving people, where literacy rate is 95% (meaning its people are educated) and which once served as the breadbasket of Africa. I was there a year ago at this time, and my visit has haunted me ever since.

Now, in addition to the highest inflation rate in the world, and 80% unemployment, it suffers a devastating cholera outbreak. Cholera is a killer; it is transmitted through food and water, and can claim a victim within 24-48 hours through dehydration. If you've watched CNN, you will see how the disease has spread. Total U.S. humanitarian assistance to Zimbabwe's food and health crisis is more than $226 million since October 2007, but the disease continues. The UN has reported a total of 13,960 cholera cases with 774 deaths since August 2008, affecting all provinces in the country. The actual death rate is said to be even higher than this reported number.

In the midst of all this, how is hemophilia care faring? There is little food in the country, minimal health care, and no treatment for hemophilia. I am proud to say that the US is the number one aid donor to Zimbabwe, and likewise, Project SHARE is the number one donor of factor to Zimbabweans with hemophilia. And I'll be the first to say this still isn't saying much. The needs are deep. We are now sponsoring individuals in Zimbabwe, supplying factor and struggling to help Elton, an 18-year-old with a grotesquely swollen knee from repeated untreated bleeds. He is in danger of losing his leg, and even life, if we do not get him medical aid.

In the midst of everything--famine, disease, unemployment, devalued currency, no gas, no foreign exchange, little medicine---the Zimbabwe Haemophilia Association perseveres. When you think about our current economic situation in the US, take a moment and think about theirs. And they do not complain, but shoulder their burdens with grace. How do you celebrate Christmas when there is so much loss, and hopelessness? They will still celebrate. The almost amazing news to me is that they will hold their Annual General Meeting, in Harare, despite the outbreak and lack of food. Nothing seems to stop them! While our national hemophilia meeting overflows with money and give-aways, nice hotel rooms and so much food we throw most of it away, their meeting will be held at a hospital, in a bare room, with no food, filled with hungry people. hungry for medicine, food and hope.

Do they know it's Christmas? They do, in the purest sense. Do we know? Christmas is a time of charity. That's what gift giving is about. Please think to help those in Zimbabwe with a simple gift: $10 is a fortune to them. Let's make a donation to their meeting, to provide food, travel money and maybe even some Christmas gifts... go to www.SaveOneLife.net and make a one-time donation to Zimbabwe, to our brothers with hemophilia, to let them know it's Christmas.

(Photos: UN; Doctors Without Borders; LA Kelley Communications)


Do They Know It's Christmas? Band-Aid 1984
http://www.youtube.com/watch?v=8jEnTSQStGE

It's Christmastime
There's no need to be afraid
At Christmastime, we let in light and we banish shade
And in our world of plenty we can spread a smile of joy
Throw your arms around the world at Christmastime

But say a prayer

Pray for the other ones
At Christmastime it's hard, but when you're having fun
There's a world outside your window
And it's a world of dread and fear
Where the only water flowing is the bitter sting of tears
And the Christmas bells that ring there are the clanging chimes of doom
Well tonight thank God it's them instead of you

And there won't be snow in Africa this Christmastime
The greatest gift they'll get this year is life
(Oooh) Where nothing ever grows
No rain nor rivers flow
Do they know it's Christmastime at all?

(Here's to you) raise a glass for everyone
(Here's to them) underneath that burning sun
Do they know it's Christmastime at all?

Feed the world
Feed the world
Feed the world

Let them know it's Christmastime again

Sunday, December 07, 2008

Breaking the stigma


It was a pleasure to see a friend of mine, Tom Albright, in Denver a few weeks ago at the National Hemophilia Foundation meeting. Always cheerful, always proactive, he's the kind of guy whose goodwill stays with you long after he's gone. You'd never know he had suffered so much, but read his story, and listen to his message. As usual, he's inspiring!


Some of you may have lead a life similar to mine. My limbs and joints were damaged by hemophilic arthopathy at a very young age. The many bleeds I had as a baby, toddler, and adolescent destroyed, deformed, and limited my joints. This led to many other secondary problems: major orthopedic surgery at ages 5 and 7 (once on each ankle to lengthen the Achilles tendons); countless pairs of braces, crutches; traction; being bed-ridden and wheelchair bound. All this led to severe muscle atrophy, limited joint movement, altered walking gait, and altered standing positions.

Now, my left foot is really messed up from the Achilles tendon lengthening surgery when I was 5. That foot is a size 8 1/2 while my right is a size 10; my feet have been that way since I was 5. I lost all my left ankle joint motion from that surgery and the weeks I spent in a cast afterwards.

I was embarrassed to show my legs by wearing swimsuits or shorts in public for a long time in my life and still have to deal with the stares from others even though I've gotten over being embarrassed. I realized a long time ago that people come in all shapes and sizes; and this is the way God made me! Still I can't help but notice some hemophilic Bro's feel like me and hide inside shoes and pants most of the time.

It used to be most embarrassing for me when it came to courting girls in high school; adulthood brought me girls who didn't "see" the deformities. My wife of 20 years is the last one of those girls. Once I was married I knew I was always going to be faithful to my wife, so I said "to hell with embarrassment" and started wearing shorts and sandals all the time. It was great! I wear shorts and sandals all the time now even when the cool dudes are wearing pants in the summer heat. Nobody ever makes me feel uncomfortable about my skinny, deformed legs and arms. I bring it up more than anyone else, just to joke around.

To me this as an issue is not discussed enough, if at all; maybe because people find it embarrassing.

Let's break this "stigma." The only way to do that is to bring our deformed limbs out of the closet. I think others need to see them. I know I do. I feel alone when I don't actually see the same hemophilia limb deformities in others. We all see Bro's with the "Hemophilia Strut" walking around at hemophilia meetings, so it's no secret that these deformities exist. Proudly showing our limbs, or showing photos of hemophilic limb deformities, could be useful to help any of our brothers who struggle with self-image. We could be positive role models and mentors for them!

Tom Albright is a 45-year-old with factor IX deficiency who lives with his wife Sue in Arkansas.

Good Book I Just Read
Learning to Breathe by Alison Wright
A photojournalist who travels to all ends of the earth for her exciting profession survives a devastating bus accident in Laos in 2000. This book chronicles her accident, her injuries (unbelivable, even to the medical profession), how she stayed alive for 14 hours with no medical care, and her eventually recovery. She not only recovered, but set the bar higher in the subsequent years while still in chronic pain, by scuba diving, white water rafting in Africa and the ultimate, climbing Mt. Kilimanjaro. It's almost too preposterous to believe, but Wright is no ordinary person. Her travels throughout Asia had put her in touch with Buddhism and serious training in meditating, and she leaned on her techniques to survive. Wright uses "breathing" as a metaphor for her life after the accident. In meditating, breathing is a technique of focusing on the moment, in an effort to slow life down and slow our thinking, to enjoy the present, and thus life. Wright survived with many scars and many years of surgeries, but came out wiser, more sensitive and with even greater adventure. You'll be amazed by all the activities she does. The story is gripping and motivating, but the writing style I will admit is a bit flat, especially considering the incredibly rich places she has been and things she has seen. Wright is obviously more comfortable telling stories through her photos; this one could have benefited from more sophisticated editing and writing to do the story and places justice. For most people, the story itself will be enough. Three stars.
 
Bayer