Ten months and five days ago, my daughter spit up a blob of blood in a Wal-Mart parking lot. Since then, we’ve seen countless specialists, had lots of tests and even took a trip to the Mayo Clinic. No one can figure out where the blood is coming from or why. It’s frustrating.
Even more frustrating? She’s never actively spit up blood at the ER. Only a handful of nurses, a pulmonologist and the team that treated her in the hospital last December have seen her vomit blood. Everyone else has had to take our word for it. They’ve seen pictures and we’ve even walked bags of blood into the hospital, but no one’s really seen it live. Until last night.
Yesterday, we were sent to the ER by the nephrologist on call. Rosie’s blood pressures were off. Her feet were swelling, she had back pain and was having problems urinating. Six hours later we knew it wasn’t serious and had a plan to follow-up with the kidney center the next day when Rosie suddenly turned pale and started shaking. A few moments later she threw up blood all over the sheets. We weren’t shocked. The resident treating her was.
“We need to send that to the lab to see what it is,” she said excitedly.
“It’s blood,” I replied and I reached for a barf bag for my teen not batting an eye.
The shock on the resident’s face was priceless. See, spitting up blood isn’t normal. They don’t see it all the time and when they do, it’s probably something serious. However, spitting up blood for us is normal and when no one in the healthcare field sees it, they don’t find it serious. They don’t really give it a second thought. It’s just not real. This is the problem with invisible illness.
Unless one can physically see that someone is ill (and spitting up blood counts), people don’t really believe someone is sick. You can’t see chronic migraines unless you look in my daughter’s eyes and see her pain. You don’t see POTS unless you witness my teen pass out right in front of you. Same thing with blood pressure issues. And most people think that Rosie spits up a mouthful of blood until they have the pleasure of watching her fill a toilet or in the case of last night, the bed.
Having someone see the blood and the physical symptoms that accompany it landed us in the hospital. We were admitted last night with the attending physician scratching his head about how to treat my child. Since we’ve had every test run to see where the blood is coming from to no avail, there was nothing new that he could order. So the plan was to make her as pain-free as possible and get her comfortable for the night.
Today the attending physician took the same approach but he added something new to the mix. He thinks she’s had a virus all week that was masked by her other health conditions causing her extreme fatigue and increased pain. The swelling in her feet? No one has a clue. Both our pediatrician and our nephrologist were contacted for recommendations and follow-up appointments. Then we were sprung.
So the blood. It’s real. Our only choice right now is to stick to the current course of finding the reason. We’re patiently waiting (this is a bald-faced lie) for the results of our HHT test from July. And, we have two more rounds of blood work to schedule with the hematologist, if we can ever get Rosie healthy enough to make her blood samples viable for testing. It’s the only way we’re going to find an answer and hopefully a cure.