Tag: HIV

Blood Light

~ Linda Wright ~ 1 Comment

“So,” said the man sitting in the reclining chair in front of me, “are you here for chemotherapy too?”

“No,” I replied as the nurse began taking my vital signs and laying the medical supplies on the tray table beside my recliner, “I’m here for blood products.” I settled back for the reactions I expected to follow.

“You see I have a bleeding disorder and my blood does not clot.” I explained.

“Oh,” he said and then, much to my surprise, he added, “So, you couldn’t have been in the Peace Corps in Bolivia like I was… too many vampires there.”

I assumed he meant vampire bats. He got me to thinking though. It certainly would be a turn about to have some creature gaining sustenance from my blood. What would my blood taste like to a vampire bat? Certainly not full bodied and probably not very satisfying.

I am usually on the receiving end. When I was a child it was fibrinogen concentrate that hung in clear glass bottles. The glass bottles clinked against the metal polls. The concentrated fibrinogen was dehydrated and readily available in the maternity ward. It was a fine powder that had the look and qualities of unflavored gelatin. It had to be reconstituted with saline before it could run through the tubing and into my veins. A nurse would stand by my bed tipping the bottle back and forth until all the thick gooey lumps were dissolved.

As a child the blood and food, mixed science with myth and created a recipe for confusion. By the early 1960’s a scientific study concluded that eating peanuts would cure Hemophilia. My Dad went out to the store and carried home a burlap sack of unshelled peanuts that stood nearly four feet high. Later the study was refuted as false, but I finished eating my bag anyway.

There seemed to be no visible improvement in my blood’s ability to clot, however, there seemed to be no negative side effects from the experiment. The same cannot be said of blood.

By the time I was twenty years old fibrinogen concentrate had been taken off the market and was no longer approved by the FDA. The glass bottles had been replaced by plastic sacks and the blood product I used was frozen. It takes time to thaw it. The liquid looks yellow, sometimes almost orange and occasionally green. Often I wonder what the blood donor had to eat just before going to the Blood Bank.

For most of my life, I have cautiously used blood products. I did not live my life in fear but I was prudent.

Since blood transfusions have been used, those of us with bleeding disorders have been the first to get blood born viruses, like hepatitis and HIV. We will be among the first to be infected with prion diseases like CJD and mad cow disease. The Centers for Disease Control and Prevention (CDC) have reported that West Nile virus can be transmitted via blood transfusions.

So if I thought I might encounter a vampire, perhaps I should wear a warning notice on their neck.

I remember

~ Linda Wright

On March 14th, 2007 Cindy died of liver cancer. It had been only a few weeks since her extravaganza 40th birthday party. The celebration, which she planned herself, included costumes, food, activities for children and adults, and presents for all. Each person she invited to the party, whether they could attend or not, received a floaty pen she designed engraved with “Bloom where you are planted.” She knew as she planned that party that the liver cancer was in it’s final stages and there was nothing else that could be done to slow her death. She knew it would probably be her last birthday and she wanted it to be a grand celebration. I believe she wanted her friends to remember her with a smile

On Superbowl Sunday in 1995, I signed on to the National Hemophilia Association online. About 25 participants sat in front of our computers and introduced ourselves. That was how I met Cindy. She was in California. I was in Massachusetts. She was 28 years old and bubbling with enthusiasm. Her life story was different from my own in many ways.
 
Cindy had been diagnosed at birth with hypofibrinogenemia when her umbilical stump kept bleeding. Her fibrinogen level was abnormally low. From infusions of cryoprecipitate she had contracted HIV and Hepatitis C. She developed Transverse Myelitis, which compromised her ability to walk. None of this slowed her down much though.
 
She and I corresponded for years, we talked frequently on the telephone, but we only met once face to face.
 

She wrote to multitudes of friends, many who also had some of the same medical issues she had in her life. She actively sought out as many women as possible who had medical problems similar to her own. She wrote to the Hemophilia Treatment Centers Program Specialists requesting that they give their patients with rare bleeding disorders her contact information.  She created a website called Shemophilia and inspired a listserv for people with Fibrinogen (Factor I) Blood disorders and their close relatives.

 
Cindy traveled frequently to attend medical conferences, often as a speaker or panelist and wrote lots of articles. She published numerous articles and contributed to a book written by Bill Hayes entitled Five Quarts of Blood. In countless ways she put pressure on hemophilia organizations to include all bleeding disorders and genders. She was also very involved in HIV and disability communities. The advocacy work she accomplished in her lifetime spread across continents.
 
Her mission was to educate, inform and inspire others. It was her life’s work.
 
Today I also think of her playfulness of spirit, her love of children, her compassion and generosity. I remember her long and engaging search for the ruby red frogs, her holiday greeting cards written and decorated by her feline companions (Skipper, Grady and Cinderella) and her silly sense of humor.