(Gross picture, I know!! A normal nose would just be "flesh" colored - this is BJ's nose, and all the red spots are telangiectasias that break open and bleed.) This is kind of a yucky informative blog, but it tells what we have been doing for 2 weeks. So . . .after BJ's mom had a big scare, he had a really really bad nose bleed, worse than the ones he usually has everyday. It was scary! So we went up to the U of U hospital to have him checked out. Come to find out, his hematocrits were REALLY low (past the level to have a transfusion)! He loses more blood through his nose bleeds than his body can keep up with. He is also anemic, so his body doesn't make blood as fast as it should. BJ, as well as his mom and 6 siblings have HHT- Hereditary Hemorrhagic Telangiectasia. HHT affects 1 in 5,000 people, and one symptom is frequent nose bleeds. People with HHT have a place where an artery is connected directly to a vein instead of capillaries. They can be a fragile site that can rupture and result in bleeding. This is called a telangiectasia (tel-AN-jee-eck-TAZE-ee-ya). Four days after our trip to the U we went back up with BJ's mom so they could have laser coagulation therapy. A laser is used to "shrivel up" all the telangiectasia sites in their noses. Everything went well. BJ is still REALLY low on iron, and still doesn't feel super good yet, but he hasn't had nosebleed since the laser treatment. I just feel really blessed that BJ doesn't have these abnormalities in his lungs, heart, or brain. (Those are serious and can lead to death.) I am thankful for medical science, and the fact that maybe now BJ can lead a half normal life without bleeding all the time. The laser therapy usually lasts about a year, and then we will probably go have the same thing done again. I am also glad that there is an HHT center in Utah. There are only 11 HHT centers in the United States, and we are lucky to have one this close to us! We are also very grateful to all the family members who took care of our kids while we finally took care of BJ. Thanks everybody!
Monday, February 25, 2008
HHT - what in the world is that?
(Gross picture, I know!! A normal nose would just be "flesh" colored - this is BJ's nose, and all the red spots are telangiectasias that break open and bleed.) This is kind of a yucky informative blog, but it tells what we have been doing for 2 weeks. So . . .after BJ's mom had a big scare, he had a really really bad nose bleed, worse than the ones he usually has everyday. It was scary! So we went up to the U of U hospital to have him checked out. Come to find out, his hematocrits were REALLY low (past the level to have a transfusion)! He loses more blood through his nose bleeds than his body can keep up with. He is also anemic, so his body doesn't make blood as fast as it should. BJ, as well as his mom and 6 siblings have HHT- Hereditary Hemorrhagic Telangiectasia. HHT affects 1 in 5,000 people, and one symptom is frequent nose bleeds. People with HHT have a place where an artery is connected directly to a vein instead of capillaries. They can be a fragile site that can rupture and result in bleeding. This is called a telangiectasia (tel-AN-jee-eck-TAZE-ee-ya). Four days after our trip to the U we went back up with BJ's mom so they could have laser coagulation therapy. A laser is used to "shrivel up" all the telangiectasia sites in their noses. Everything went well. BJ is still REALLY low on iron, and still doesn't feel super good yet, but he hasn't had nosebleed since the laser treatment. I just feel really blessed that BJ doesn't have these abnormalities in his lungs, heart, or brain. (Those are serious and can lead to death.) I am thankful for medical science, and the fact that maybe now BJ can lead a half normal life without bleeding all the time. The laser therapy usually lasts about a year, and then we will probably go have the same thing done again. I am also glad that there is an HHT center in Utah. There are only 11 HHT centers in the United States, and we are lucky to have one this close to us! We are also very grateful to all the family members who took care of our kids while we finally took care of BJ. Thanks everybody!
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1 comment:
Oh wow! I'm sorry to hear that. That makes me kinda nervous because Jake has a nosebleed almost every day and sometimes they are very bad. Do you think it would be worth it to get it checked out?
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