Born with Prothrombin Mutation Gene: Tyson’s Story

Born with Prothrombin Mutation Gene: Tyson’s Story

I was healthy 39-year-old female, who had been married for almost a year with an 11-year-old daughter when I experienced stomach pains, diarrhea, and vomiting that concerned me. I called the doctor’s office two times in about four days, and both times, I was told I had a stomach virus and sent home. I will never forget being up all night with stomach pain I couldn’t explain and a headache that made it hard for me to think straight. I gave my husband a kiss that night and said, “Wake the kids for school. I’m on my way to the ER.”

Although I do not recommend it, I drove myself to the hospital, even though I was not thinking straight. I told the nurse I knew something was wrong, but I did not know what it was. I woke up two days later to be told I had emergency surgery to remove half of my large intestine, because a blood clot had been blocking blood flow and my intestines started to die.

The next six months changed me. I came home with wound vac and was barely able to move around. I couldn’t eat, or do regular, daily activities for eight weeks. I was told all about the horrible nightmare my family had to live through. My child was told that her mommy may not make it through the night. My husband was told he may not even get to celebrate his first anniversary with his wife. My poor mother was thinking she might lose her only daughter – every time she looked at me for months after my surgery she would just cry and say, “Thank you, God, for not taking my girl.”

About five months after surgery, we were able to do some blood work and meet with a hematologist and I found out I am positive for Prothrombin Mutation Gene. I now live with five blood clots in my brain, one in my spleen, and one in my stomach. I just recently found out I have incisional hernia, which will require a complete abdominal reconstruction. However, the surgery will have to wait until my doctor and I feel I am strong enough to go through the surgery and the recovery period. I’ve had a slow recovery catching a C-Diff infection on two different occasions and also sepsis. I’ve been hospitalized three times since September 2015. Sometimes, I feel like I will never be normal again. I have been having trouble with even simple things like eating, but I keep track of what works and doesn’t work. For me, it is like learning the body all over again.  It is important to know the signs and symptoms of blood clots – study up on everything and be your own advocate. It’s your body and you will know when something just isn’t right.

After meeting with several doctors, I was told my daughter was a true miracle. Although I had miscarried one child before her at six months of pregnancy, I never knew I had this mutant gene that could cause blood clots. I had an extremely high risk pregnancy with my daughter, and she came early at 35 weeks. We do plan to get my daughter tested for this gene when she gets older, and we plan to talk to her about her choices when it comes to estrogen-based birth control and starting her own family.

This experience changed my awareness about my own body. When something is wrong it is important to not be scared to tell the doctor, “Something is wrong.” Live life to its fullest – every day, every minute, and every second counts. We are not guaranteed tomorrow, but with the grace of God, we may get a second chance and we may get to tell everyone just how much they mean to us and how much we love them.

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