Not Just a Carrier

Women Are Not Just Carriers

Categories: Adult Women, Community Voices, Dateline Stories, Families, HFA News

May 12, 2015

Jennifer and her father Gary during a book signing of, Vial 023: A Father's Pursuit of Justice

While some women experience bleeding symptoms monthly or even more frequently, other women may go years before bleeding issues are recognized, making a diagnosis even more difficult. Jennifer was a hemophilia carrier for 33 years before she had her first bleed. She shares the emotional and physical pain she endured as she struggled to get a proper diagnosis and treatment. Here is Jennifer’s story:

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For 33 years I was just a hemophilia sibling and a carrier. Being a carrier never frightened me. I grew up around hemophiliacs. In fact, hemophilia didn't scare me until a year ago when I not so gracefully fell on my knee. I immediately knew something was wrong. That fall would change my life forever. The swelling just kept getting worse and elevation and ice weren’t helping. Even though it had been over 20 years since my brother's death from AIDS due to contaminated factor products, this seemed all too familiar.

As if having a bleed for the first time isn’t painful enough, I was bombarded with questions from people who don't understand how you can live 33 years without a bleed. I’ve always known I was a carrier with a low factor level. I have factor, but my body has to be reminded to make more and now that I'm older, sometimes it just can't make enough.

Females can and do have bleeding disorders. The type and severity of symptoms experienced by a female with a bleeding disorder depends upon the diagnosis and severity of the disorder. Some of the symptoms women may experience include:

• Heavy menstrual bleeding
• Frequent nosebleeds
• Prolonged bleeding following a dental procedure
• Post-partum bleeding (excessive bleeding after giving birth)

I went to an orthopedist who did x-rays but saw nothing to explain the pain and swelling. As it got worse, I thought, maybe it was a bleed. It was warm to the touch, pain was excruciating, swelling was starting to affect my thigh, but I had never had a bleed before. I got online and shared my experience and symptoms with hemophilia Facebook groups, family, and friends. Everything I described pointed to a bleed. My hematologist checked my factor level which was around 80%. He never touched my knee and only looked at it because I pulled my pants down in agony and frustration. After a couple weeks, the swelling and pain worsened. I called my hematologist to give me DDAVP to see if it would help. For four days I went to the outpatient center at a hospital and infused for 2-3 hours. After a week of DDAVP, the pain and swelling started to subside.

              Jennifer with her mom, Karen

I realized that it would be helpful to visit my local HTC, so if I ever had another bleed I would be prepared. However, that turned into a horrible and incredibly shocking experience.

I knew my family wasn't exactly welcomed at the HTC since our participation in the lawsuit against the pharmaceutical companies and doctors in the 1980s. But I also felt this was a medical establishment with a sole purpose of treating hemophilia, I spent 6 hours in a room where I was visited by a social worker who asked me, “How do you think your life would be if your brother never had hemophilia?” I've been seeing therapists for over 25 years (I'm not ashamed of this) and I have never been asked that question. Then finally I saw the lead doctor instead of the head doctor, it was an intern. I had made this appointment 3 months in advance to see the hematologist and she wasn't there. No one had read my medical records. The intern didn't even physically examine me or touch my knee. Disappointment and confusion quickly turned to anger.

It took me three months of phone calls to get my blood work results. I was told by the nurse, not a doctor, that my factor level was 80% and I was therefore not a carrier of hemophilia. According to her I had no indications that I had any hemophilia issues. I didn't argue, I just hung up with disappointment, doubt, and major confusion.

I'm not good at math, but 80% factor level wasn't 100%. I've previously had levels ranging from 20%-70%. So how can a Hemophilia Treatment Center tell me I'm not a symptomatic carrier or even a carrier? I didn't realize at the time, but for some women, it is common for clotting factor levels to fluctuate.

One day going up the stairs led to my knee swelling for 4 months. After my first experience I knew I'd have to see the orthopedist first. At my appointment, he mentioned a possible torn meniscus and ordered an MRI. The MRI ruled out a tear and it was back to begging my hematologist for treatment. He called the HTC for recommendations and was told by the nurse, not the HTC hematologist, that I did not have any hemophilia factor issues and that they would not treat me for hemophilia. The emptiness and outrage I felt when he repeated that to me cannot be described.

I continued in horrific pain, with my entire leg now swollen. I decided to go to the ER and was finally prescribed a daily dose of DDAVP. I was using a walker because the pain and swelling was so severe.

Then my angel came to my rescue. She works in Utah and could be my doctor as long as a local doctor would agree with her treatment plan. Dr. Danielle Nance is not just a hematologist, she is also a female with hemophilia!

Jennifer advocating for the passage of the Ricky Ray Relief Act in the 1990s

When I brought this treatment plan to my local hematologist, he fired me as a patient. Yes, I got fired by a medical doctor during a health emergency. I had done nothing. I had not told him that I thought he was incompetent because I knew I needed him. I did not say a word when I sat in a wheelchair in his office with tears rolling down my face waiting for 3 hours to see him. I kept my anger, frustration, exhaustion, and painful thoughts to myself.

I went to my general practitioner hoping he would be willing to treat me. He had spoken to Dr. Nance and agreed with her recommendations but thought it best that my hematologist work with her. As we waited he called my “ex-hematologist.” My general practitioner told the hematologist he truly believed I was having a hemophilia bleed and that giving me factor could only help.

I was prescribed a factor product, had outpatient surgery to have a PICC line inserted, and began infusing for the next 4 weeks.

After the PICC line was removed, I visited Dr. Nance. I made some incredible friends that were female hemophiliacs. A year later, I have learned that I have severe arthritis and a bone spur in my knee as a result of not receiving the correct treatment. Of course I'm angry and really frustrated, but I'm hopeful. Hopeful, that by sharing my painful and extremely long journey it will spare even one person the pain and emotional roller coaster I endured.

There is a stigma that comes with chronic illnesses. You realize that with each setback, you miss the chance to do “normal” activities. It’s the realization that it’s no longer mind over body, but body over mind. It’s crucial that when you finally accept your illness that you accept there are going to be many days that you can't fight your body, you have to listen to it and do what needs to be done. It’s not a daily struggle, but rather a struggle every minute of every day. You have to learn to speak up and become your own advocate, because no one knows your body better than you.

“As women, we need to be vigilant, educated, and vocal about hemophilia.” – Jennifer Cross

This journey—this one bleed—it’s left me vulnerable. My heart aches with each step I take because I am full of fear that I’ll feel the dark pain again. I'm almost afraid to walk. I'm guarded in every movement.

As I reflect back on the journey of my first bleed, I am reminded of my legacy. A legacy that I have a responsibility to carry on. I wouldn't have felt safe receiving factor if it weren't for my parents, Dr. Dana Kuhn, Jan Hamilton, and others that took the steps necessary to allow me to receive clean blood products. I owe it to not just to them, but the thousands of hemophiliacs who continue to be advocates for the community. We need to be vigilant, educated, and vocal about hemophilia.

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Jennifer Rhea Cross is a 34 year old freelance W]writer from Louisiana. Jennifer is the daughter of Gary W. Cross, author of Vial 023: A Father's Pursuit of Justice, and chairman of the PSI Board of Directors, and Karen Isaminger Cross.  Jennifer is an advocate for hemophilia, AIDS, and chronic illness. She is a dog lover and Maltese enthusiast.

I Survived.

My father has written this story about me for his book. I will never be able to write about this experience because it still haunts me every day.

                                            Jennifer's Story  

There appeared to be nothing left for us to do but to wait. We had to wait on the appeal process and it certainly wasn’t looking good. We also had to wait on the appropriations committee to find the money or I should say to find the wisdom to fund the Ricky Ray Bill.

We were back home trying to pick up the pieces and lead a normal life for Jennifer. Jenn was in a Catholic High School. She transferred from another Catholic school for only girls to a Catholic school with boys and girls. She was much happier at the new school. Jennifer started to have problems with a group of kids at school. First someone keyed the word AIDS on the door of her car. There was no warning and it didn't happen on the school campus. We figured it had to be someone at her school who knew about us. We notified the school of the off campus incident and they could only document what had happened. Later she had problems with two of her classmates on the highway. When she started home they would make sure to leave before she did. When they saw her behind them they would slow down. When she would try to pass, they would block her way. Again we notified the principle and he was totally useless. I told Jenn if it happened again we were going to call the police.

I came home from work one day and Jenn’s car was there along with her friend’s car. I walked in and she was sitting on the couch and she had been crying. My question was, "What happened to you?” “Did you get in an accident?”

No, she told me. She had been attacked in the parking lot at school. “What do you mean attacked?” “Two girls beat me up.” “Are you ok?” “Yes I am fine.” I said, "No you are not." A large piece of skin was removed above her eye on her eye brow. She had been bleeding.

A section of her hair had been pulled from her head. I was scared because we were not sure of her condition and I was angry. I wanted to know exactly what had  happened.

She said, “When I got to my car two girls were waiting for me.” Did you know them?" "Yes, it was two girls from my school." Go on, then what happened?" I told them to get out of my way, I want to get in my car and go home. As I approached the door one girl said, 'You are not getting in your car.' I said, Yes,  I am. I made a move to get in the car and one of the girls grabbed my hair and threw me down to the concrete. The first time she kicks me she said you AIDS Whore and kicked me again, then said this is for your little dead AIDS infected brother and kicks me again. "After that I wasn’t sure what happened. Someone made them stop."

What did the teachers and the principle do? They were not there; no one was in the parking lot. There were no teachers or principle to help me or stop them. One of my friends brought me inside the school. Someone gave me ice to put on my head. They called Mom but told her I was ok. Then they let my friend and I drive home. I asked again, how do you feel? She said her head was hurting. I told Karen, "Let’s go, we are taking her to the hospital."

On the way to the hospital I asked Jenn again how she was feeling. She said she felt ok. There was an East Baton Rouge Parish Sheriff Sub-Station on the way to the hospital. I asked Jenn if she felt good enough to stop and press charges against the girls before we proceeded to the hospital. She said it would be alright. We went in and told the Deputy what had happened.  He was amazed that no report had been filed. He filed an arrest report and called for the girl to be picked up and arrested. I told him we couldn’t wait. We had to go to the hospital to get Jenn checked out.

The ER admitted Jenn and ran X-rays. It showed she had a concussion.  It scared me because we had stopped to file the report instead of going directly to the hospital. How stupid of me.

The police came to the hospital and continued questioning Jenn. They picked up one girl and booked her into the parish jail. They did not arrest the other girl because Jenn couldn’t remember if she had touched her.

Finally we got home and some of our friends came over. Again we were in an extreme case of disbelief and agonizing frustration. Here I was again not able to protect my child from the aftermath of AIDS. First my son gets this horrible disease and dies. Then my daughter is beaten and could have died for something that she was completely innocent of.

Why couldn’t we stop this? Why didn’t we see this coming? Now what are we going to do about it?

The ER Doctor told us to watch for signs due to the concussion. We also talked to her psychologist that she had been seeing since Brad died.

Our next task was to go to the school and meet with the administrators. This is really crazy. The Catholic School System has a no tolerance rule. Instead of being reported as a hate crime it was reported as a fight between two students and the rule says both students are expelled from school.

We were so angry! How can you expel our child for trying to get in her car on school property? Well, Jenn was suspended for three days and the other girl was expelled from the school. The girl, who struck Jenn, was released from jail after spending one night. We heard her parents were upset that she went to jail for a little girl fight.

The administration at the school suggested Jenn go to another school. We went crazy, there was only a few months of school left before she graduated. We would not pull her away from her friends.

The next thing was really was unbelievable. I contacted the Federal Authorities and tried to file a hate crime charge against both girls; they were seventeen and considered adults.  They told me in Louisiana only Black People could file hate crime charges. Again I was so upset I don’t understand the justice system in our country. The law has now been changed, AIDS crimes are now considered a hate crime.

Karen decided to call  Tom Mull, our attorney, and told him what had happened. He was also outraged. He told us we were going to file a lawsuit against the school and the Catholic Dioceses. Karen was working for the same Catholic Dioceses at an elementary school. How could we sue her employer?

The girl’s parents never attempted to contact us to discuss what their kids did. I called Tom Mull, our attorney, and said, “I don’t give a dame what happens to Karen’s job, file the lawsuit”.

 The Bishop, the head of the East Baton Rouge Catholic Diocese decided to write a story in the Catholic Commentator, a church newspaper, about the Cross Family. He said we had over reacted to the student fight. We were just grief stricken over our son’s death. It was not the Catholic Dioceses fault. Brad had been dead for four years. We weren't exactly grief stricken. If I could have gotten my hands on that little man’s neck, he would have been calling for the last rights.

Again the court proceedings were really difficult. We didn’t actually go to court. Their attorney, who was another little man, was a real jerk to Karen and me. We settled the case and gave Jenn the money. Tom Mull requested as part of the settlement that their attorney apologize to the Cross's. He came over to me and asked if he could apology and shake my hand?  We wouldn't accept his meaningless apology. I told him, ‘We had enough of their crap and to get out of my sight." He left.

Brad suffered unbelievably and finally lost his life but it did end for him. Karen and I went through hell, but hey, we are adults and no one said life would be easy. But Jenn shouldn’t have experienced all of the things that continued to happen to her.

Remember I told you about our neighbor’s little girl shooting herself?  She was Jenn’s friend, this happened a year before Brad's death. Jenn’s friend at Most Blessed Sacrament School died of cancer in the eighth grade. Then one year late she lost her brother who was her protector. He was her big brother, she loved him so much.

Two years later, Clay, our neighbor's son died with no warning. She grew up with him, and he was also like a brother to Jenn. Then the Dixon’s son Kenny, who she also loved again like a brother died of AIDS. The final heart break was when her cousin Paul, died of AIDS, Paul was much older than Jenn but he was always there for her. She could call him any time of the day; he was always there. In the space of a few years Jenn lost six people she loved and cared about. Most people do not experience this kind of lost in a life time, certainly not at her age.

I can remember picking up Jenn one day after school at St. Joseph Academy, an all girl school. She was in the ninth grade. Jenn told me when she got in the car with tears in her eyes, "I'm glad you got here when you did daddy, I was watching all the big brothers picking up their little sisters and I was getting very upset. Brad should have been here for me." What could I say but agree. I am not going to lie and say she handled everything with no problems, no one could. I just wish as her father I could have protected her from all of these things that a little girl shouldn’t have to face.

Jenn found a young man who she loved very much. He was a fine young man. He was a student at West Point and she had known him since high school. One day I received a phone call from her boy friend at my office. He called to ask for Jennifer’s hand in marriage. I, of course, said yes! It looked like things were going to turn around for Jenn. She was to marry this great kid. Karen and I were excited and started making arrangements at West Point in New York for the wedding.

About six months before the wedding Jenn made a trip with her finance's family. A few months later he called the wedding off. Another disappointment in Jennifer’s young life.

We were never told the reason for the break up, she didn’t know. We could only guess. Jenn had decided to be tested to see if she was a carrier of hemophilia. The results were positive. Jenn’s children could have hemophilia. She shared this information with her young man and his parents.

 Jennifer was only twenty one years old, but she had already lived the life of a very old person, experiencing disappointments and tragedy. There was very little we could say at this point. We just had no answerers. All Karen and I could do was to love her with all of our hearts and always be there for her.

Karen’s best friend since they were kids, Dottie Knox, was the kid's Nana, at least that’s what they called her. She was always there for Karen and Jennifer. She loved both of our children and she was very special for Jenn during all of these trying times. Thank God she was there for Jenn after the break up and especially after Brad died. She also was someone Karen could phone anytime of the day or night just to talk to. As I said, she was and still is very special to our family.

  

A Lesson From God

I WROTE THIS STORY WHEN I WAS JUST 14. IT WAS PUBLISHED IN "CHICKEN SOUP FOR THE KIDS SOUL."

Lessons from God

One cannot get through life without pain. . . What we can do is choose how to use the pain life presents us.

Bernie S. Siegel, M.D.

There was a time in my childhood when I believed that God was punishing my family by making us watch my only brother die.

My brother Brad was a hemophiliac. If a person has

hemophilia, his blood doesn't clot in a normal way; so, if he gets a cut, it is very difficult to stop the bleeding. When too much blood is lost, he has to have his blood replen­ished to keep him going.

Even though Brad couldn't be as active as other kids because of the hemophilia, we had many common inter­ests and spent a lot of time together. Brad and I rode bikes with the neighborhood kids, and we spent most of our summers swimming in our pool. When we played football or baseball, Brad would throw the ball, and the rest of us would do all the rough playing. Brad picked out a puppy for me when I was seven, and I named her PeeWee. My brother, Brad, was my protector and my best friend.

When Brad was ten, he received blood from someone who didn't realize, or was too selfish to admit, that he or she was carrying the AIDS virus.

I had just entered the sixth grade when my brother began to have serious symptoms, and was diagnosed with AIDS. He was a freshman in high school and had just turned fifteen. At that time, many people were not edu­cated about how you "catch" AIDS and were very afraid of being around people who had it. My family worried about how people would act when they found out.

Our lives changed when Brad's symptoms became obvious. I couldn't have friends over to spend the night. Whenever I had a basketball game, only one, never both of my parents, could come to watch because someone had to stay with Brad. Often, my parents would need to be with Brad during the times he was hospitalized. Some­times they were gone for a week at a time while I stayed at a neighbor's or an aunt's house. I never knew where I'd be from one day to the next.

Through all the sadness and confusion, I grew resentful about not being able to lead a normal life. My parents weren't able to help me with my homework because they had to tend to Brad's needs. I began having problems in school. The emotional part of slowly losing Brad, my best friend, made things even worse. I became very angry and needed to blame someone, so I turned my blame toward God.

It was a burden to keep his condition a secret, yet I knew how cruel kids could be. I didn't want anyone to see my brother not looking at all like his former self, and lying in diapers. I wasn't going to have him be the subject of their jokes at school. It wasn't my brother's fault that his twelve-year-old sister had to change his diapers or feed him through a tube.

 The AIDS virus caused damage to Brad's brain and destroyed the person that he had grown to be. Eventually, he became like a very young child again. Instead of listening to current music or talking about things that kids in junior high or high school would be interested in, he wanted us to read childhood books to him. He wanted me to help him color. I felt like I had lost my brother while he was still alive.

I remember the day that Brad died, just like it was yes­terday. The old musty room was filled with recognizable faces. There was my brother's worn-out body in the bed. The body was now empty, and th~ pain could no longer be felt. That was the end of my only brother's life-two weeks before his eighteenth birthday.

Between 1980 and 1987, over 10,000 hemophiliacs like Brad received blood that was infected with the AIDS virus. Ninety percent of these severe hemophiliacs who were infected are either living with AIDS or have died from it. If the blood that they received had been tested before they gave it to them, their early deaths could have been avoided. As I see it, my brother was basically murdered.

The experimental drugs used to battle AIDS only made him worse. Even some of the doctors seemed to have a what's-the-use attitude. Some of these things made losing him even more painful.

Since his passing, I've searched for some reason for his life and death. Although there may not be a complete answer to my question, I believe that there was a purpose. Brad taught us many things. He is still teaching people, even now, with the story of his life. I told his story to someone just the other day, and that person learned something.

Brad was a person who always fought for what he believed in. He taught his friends and family members not to give up. He never gave up, and he never gave in to his hemophilia. Although Brad was special because of it, he never wanted to be treated special. He would play basket­ball with the heart of Larry Bird, but the body of a hemo­philiac. Those who watched him play for his elementary school team would see him limping up and down the court, trying his hardest.

Out of respect for his memory, we have not given up. My family and I have taken an active part in helping to make a difference in the way that people with hemophilia and AIDS are treated. We have been interviewed on the television program, 60 Minutes. We have gone to Washington D.C. twice, fighting for the Ricky Ray Bill to be passed by Congress. This bill would help families who have been through similar or worse situations. The bill was named for a boy who was taken out of school because he had AIDS. People who were afraid of AIDS and thought they could get it from him burned down his fam­ily's home. The people didn't understand that people can get AIDS from tainted blood donations.

My brother gave so much love and happiness to so many people while he was alive, that his death left us feel­ing empty and sad. Before he was infected with AIDS, my big brother, Brad, was my protector and the person I would tell all my secrets to. Brad can no longer protect me, or even talk to me, and I miss him every day.

Since Brad's death I've come to realize that God was not punishing my family for anything. He simply had given us a gift of love-my brother, Brad-that had to be taken back. With these lessons from God, I can continue with my journey-this journey called life-with the hope that everyone with whom I share Brad's story will learn exactly how precious life is.

Since writing this story, I have lost a cousin & numerous friends the same way, I almost lost my father to cancer, and have been disagnosed with several illnesses including hemophilia  But will never give up and continue to help others.

Jennifer Rhea Cross