Amanda Ganza

Let me start off by saying that those with FVL in their families can never be too careful. You are never too young or too healthy...my name is Amanda Ganza, I am only 18 years old, and last August, I had my first life threatening pulmonary embolism...

I never thought that I would be able to say that the internet saved my life. However, thanks to this website, nothing could be closer to the truth. My story begins about a year ago, in late May, 2005.

I had always had an irregular period, so when I spoke with my OB-GYN about options for regulation, he put me on oral contraceptives. However, my mother told him that my father was a carrier for the Factor V mutation, and so they sent me to a hematologist to be tested.

According to Dr. Tassan (an amazing, caring man) I was heterozygous for Factor V Leiden's disorder, and I also had Protein S and C deficiencies. However, he said that since I was a young, healthy, active woman and since my father's sister had not had any complications resulting from her FVL, that I had nothing too big to worry about until I got older and wanted to have children.

He said that I appeared to be the same as the many FVL patients who live normally throughout their lives, without having any complications.

Apparently, he was wrong; I don't get to be one of those people that live a completely normal life. I had been sick for the weeks before and after I went to see him, but it was only a chest cold and I had been coughing a lot. I felt completely better on the following Sunday, August 7th, but nonetheless I was curious about the diagnosis I had just recieved and decided to look it up online. I found fvleiden.org, read through the entire site, and followed up with other sites to read more about the DVTs and PEs listed on the homepage. I was scared, but confident now that I knew the symptoms and what to look out for.

Around 12pm on August 8, 2005, I was sitting on my couch, typing on my laptop like a nice little geek, when I all of sudden started having trouble breathing. Every time I breathed in, I felt pain in the middle of my chest. I tried to sit there for a little while, hoping it would go away, but then I felt like I wasn't getting enough oxygen so I tried to take a deep breath in...and the pain was so excruciating that I screamed.

That's when I knew something was truly wrong. I called my mother at work, gasping into the phone: "I...can't...breath, my...chest hurts...when...I breathe in. I...have to...go...to the hospital." She, of course, kept it together on the phone with me, but was panicking inside. She called my Grandmother and my Aunt, who immediately rushed me to the emergency room of Chilton Hospital.

They checked the oxygen saturation in my lungs (which was normal - 98%), then got me into a bed and then proceeded to do an EKG, some bloodwork, and an X-ray of my chest.

All of these tests came back perfectly normal. The doctor then said, "You should be out of here in about an hour. We think you pulled a muscle from coughing so much, so we'll give you some morphine to dull the pain and then if it's gone in an hour you can leave with a prescription for some painkillers." Something deep inside of me knew that this wasn't the truth...I remembered everything I had read on this site and the information I had found from other sources, and I knew that what I was experiencing was no pulled muscle.

So I said, "No. I just found out that I have Factor Five Leiden's disorder...and I think I have a blood clot." The doctor said "Well, to find that, we'll need to do a catscan...but that's very rare, and we highly doubt that at your age you would have one."

My Grandma jumped in with "No. Do the catscan now, just to be safe." About 45 minutes later, the doctor came back holding a peice of paper, and said in a low voice, "It seems your inclination was correct...you actually do have a blood clot in your lungs."

So, they admitted me into hospital around 8pm, put me on a blood-thinning IV drip, and continued to check on me throughout the night.

The nurses told me that it was a good thing I had done my research, because they heard the doctors saying that if I hadn't ordered them to do the proper tests, they would have just sent me home with some morphine, and the pulmonary embolism could have travelled and killed me.

First thing in the morning, my hematologist, Dr. Tassan came to read my charts and tell me what was happening. He told me that when he heard that I had a clot, he was absolutely shocked.

I was supposed to be young, healthy...the last of his Factor Five patients he expected to actually develop a clot. Then he told me what all of this meant.

First of all, I had to give myself injections of anti-coaggulants in my stomach for the next two weeks. I also have to be on Coumadin therapy for the rest of my life. All in all, I'm fine. I just have to be really careful. I got very lucky, because I caught the PE before it could do any permanent damage, and now I know what to look out for and what to do. I am also lucky that it happened before I went off on my own to college.

While I was depressed at first because I couldn't have a so called "normal" lifestyle, I now realize that if all I have to do to stay healthy is remember to take my Coumadin every day, I am pretty well-off. I have also learned to appreciate life more...I'm grateful just to be alive. I hope my story inspires others to do their research, and never be too careful. Know your disorder, know your body, and know yourself...you never know when it will save your life.

Amanda Ganza

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