It’s been seven months and fifteen days since my teenager spit up a blob of blood in a Wal Mart parking lot. While the pattern of how it’s happening over the months has changed (at first it was like reflux, now it’s more like forcible vomiting), one thing has remained the same- the blood is bright red. You know that red color you see when you cut your finger? It’s that color and I’ve been mentioning that to doctors for more than six months.
When Rosie was in the hospital in December, I started taking pictures of the blood like the doctors asked. I did it for six months and can’t tell you how many specialists stared at the pictures on my phone and still thought it might be coming from her stomach. I fought them time and time again with some of the research I had done- the blood didn’t appear to be diluted at all. There were never any stomach contents when Rosie vomited. She’d been scoped twice, no blood was seen and then she spit up blood right after. I was insistent that the blood had to be coming from somewhere else. We found out in May that I was right- we just didn’t know where.
When my phone died in May, I made sure to download and back up all the pictures of the blood. I have them in chronological order. If you take the time to look at them, they tell a story. At first, the blood is thinner but she would sit for a couple of hours and spit it up so it makes sense that it would have saliva in it. Now, it’s thicker, more robust and often full of clots. Since she feels terrible all day before she vomits it up, it’s my theory that it’s pooling somewhere in her body for a while before she has to run to the bathroom and it’s coming from somewhere above her stomach and below her chin. Yesterday, I found out that I’m not crazy.
We finally got into the Hematology and Oncology Clinic at our local children’s hospital. I’ve said all along that the answer has to be in the blood because we’ve ruled out every active bleeding source my child could possibly have in her body that’s a major organ. The doctor yesterday agreed. Ten minutes into the conversation he asked me if Rosie had been tested for HHT and a big, wide grin hit my face. A couple of weeks ago, I fought both our pediatrician and the genetics department here in Kansas City to test her. Finally, I was talking to a doctor that was on the same page as me. Such relief.
If you’re not familiar with HHT, you’re not alone. It’s pretty rare. I only know about it because I have a friend in Chicago that just happens to have it and mentioned it to me back in December. In January, our pediatrician told us that Rosie would be tested because she has angioectasis in her small intestine but once we ruled out that she had no AVM’s in her brain, eyes, lungs, stomach etc. it was dropped. Since we can’t find a source, I asked that they run the test. And, no she doesn’t completely fit the description of someone who has HHT (she has no abnormal blood vessels in her fingers and doesn’t have nosebleeds all the time), it still could be a possibility. Our hematologist agrees. (In an interesting turn of events, this is the only visit that I didn’t have a picture of blood on my phone. Good thing he believed us.)
We spent a great deal of time yesterday discussing all of Rosie’s symptoms and since blood disorders run in families, our family history. The interesting thing? No one in my family has one. However, that doesn’t mean that I’m not a carrier. I’ve had bleeding issues after every procedure I’ve ever had. I’ve also had heavy periods for thirty years. I get nosebleeds that last longer than five minutes and come back. All of these things signal that I may not clot that well.
As for Rosie, before she started spitting up blood, she was already anemic because she had heavy menstrual bleeding. Since the blood started, she’s seen blood in her urine, stool and has had nosebleeds with more frequency. Often, when I look over at her, she’ll have a tiny dot of blood on her face or arm that we’re not sure where it came from. She’ll also wake up with blood on her sheets from a mystery wound.
After a ninety minute work-up, the hematologist had enough information to start looking at blood disorders. Primarily, anything that has to do with clotting. So, Rosie had about ten vials of blood taken yesterday and we’re going back in August to do it all again. It takes three positive results to get a diagnosis.
Here’s the thing- we may not get one. We’ve been told by genetics that it’s pretty likely that we’ll get an inconclusive or negative result from the HHT test. We’ve also been told by the hematologist that his tests may come back the same way. After doing this for seven months, I think both of us are okay with that answer because yesterday we got some hope. Whether or not we get the diagnosis, we’re in the right place to get something to treat the symptoms. We just have to be patient while we go through the testing process.
So what does that mean? Hopefully, we’ll be able to narrow this down. If not, we’ll be able to get some kind of prescription to help with the clotting process so poor Rosie’s not spitting up blood all the time. He’ll be spending some good quality time with our chart and doing a little research while we wait. We’ll be keeping our fingers and toes crossed.