HHT - Hereditary Hemorrhagic Telangiectasia. It's a disease that's been passed down in my family for generations. All three of my sisters have it. My mom and all but one of her siblings have it. And chances are that my kids all have it. I'm not positive about Carter, but I'm pretty sure about the rest of them. Tanner, my stepson, got lucky because he doesn't have my genes.
HHT causes abnormalities in the blood vessels, usually in the nose and skin, and sometimes in the liver, lungs, and/or brain. Nosebleeds are the most common complaint among HHT sufferers. I've had nosebleeds for as long as I can remember. All of my teachers knew there was a chance that I'd run out of class with my hand cupped over my face. My kids are starting to deal with this now, too. Fortunately, it's really not a big deal.
But as I get older, my bleeding is getting more severe. It's particularly bad when I'm pregnant, due to the increase of blood volume. I've had some bad enough bleeds to make me weak for quite a while. And it can be pretty scary. I coat the inside of my nose with lanolin at least once a day, and I avoid the most innocent scratching in fear of bleeding. These things help, but I bleed often and without warning. Some days I can't get the bleeding to stop and walk around with tissue shoved up my nose. I just traded in a van that had a nice big blood stain on the driver's seat belt. (Sorry about that. I hope the dealership got it out before some poor soul discovered it in their new van, although it looked kind of brownish. Maybe they wouldn't realize it was blood?)
This pregnancy has gifted me with the 2 worst nosebleeds I've ever had. I bled like crazy for the first trimester! And then it almost stopped. Apparently the hormone shift in the second trimester worked in my favor. But as I move into my third trimester, it's starting back up.
Recently, I found a prenatal yoga class, and a good Groupon deal, and started taking yoga again for the first time in years. Yay! I love yoga! The first two classes were awesome - I loooove the instructor. But Thursday night I went for my third class and was sorely disappointed. As soon as I went into my first forward fold, my nose started dripping blood. I cupped my hand under my chin, and grabbed the box of tissue at the front of the class as I ran out the door. I spent some time in the hallway getting it stopped, and even shoved some tissue in my nostril for good measure. Thinking I was safe, I went back in and got into downward dog with the rest of the class. But to my dismay, blood starting seeping through the tissue and I had to run out again. I didn't dare go back inside until the sun salutations were finished. I spent the rest of the class only halfway attempting the positions. Even child's pose puts a lot of pressure on my face. And because of the tissue shoved up my nose, I couldn't get into the breathing properly, which compromised even shavasana at the end, which is my favorite part of the class!
I was embarrassed and ran out the second the class was over. I felt like crying as I drove away. I was definitely feeling sorry for myself. I thought about my grandma, who eventually died from the complications of HHT, and about my aunts and uncle, who have had significant problems due to the disease. They have had such good attitudes about it. And I realized that of all the hands to be dealt in this life, I would rather this than any other. Everyone has struggles, and I don't know if I could handle anything else. This, I can deal with. I can go to the drive-thru at Wendy's with Kleenex in my nose. I can teach my kids how to deal with nosebleeds. I can manage being really weak from loss of blood. Heck, I'm a pro at getting blood out of just about anything (except seatbelts, apparently). Research is being done and new treatments are being discovered. Hopefully this will become less of a burden, especially as my children grow older.
I'm not sure when I'll go back to my next yoga class, and when I do, I'll have to explain my nosebleeds to the instructor. She'll be nice and understanding, just like everyone is when I tell them why I'm gushing blood. And I'll remind myself that I'm grateful that I have a body that, even weeks away from delivering a baby, is healthy enough to do yoga. That I've been able to deliver relatively healthy children - as many as I've wanted. And maybe someday I'll stop being such a whiner.
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4 comments:
I feel your pain, Mel! It seems that the longer I live, the more I appreciate my health. As a teenager, and even young adult, I really took my health and strength for granted, and assumed I'd never have any limitations. How naive I was! Most of us struggle with one thing or another, when it comes to our physical body. I just wish sometimes that the bleeding wasn't such a public struggle! I used to have to run out on my Sunday School class because of nosebleeds, and one time a member of the Bishopric asked if my husband hit me! I was so embarrassed. Of course, he was joking, but I just wanted to be invisible instead of running around church with toilet paper stuffed up my nose! Hang in there. And don't give up on yoga! Talk to the instructor next time, and hopefully your nose will cooperate better, too! Love you!
Very interesting. Sorry, that would be hard to deal with. I have a bleeding disorder called Von Willebrand's disease. It doesn't affect my daily life too much, except for super heavy periods and bruising. But once, I had to have emergency surgery because of some freak internal bleeding. :( Good luck with your new baby!
Hello Melanie,
I am a Yoga instructor and Yoga Therapist. I also have HHT. My mother and my grandmother died from it. My grandmother was Columbian and they actually didn't know what she had. Her death certificate said it was a "non contagious form of Tuberculosis". She obviously had AVM's in her lungs! My mother had a much more severe case than I have. She bled internally and received multiple blood transfusions every month. The blessing for us is that they know so much more now than ever before!
I hate those days that I go in to teach and suddenly in the middle of a down dog my nose starts too bleed. It's not often but I know exactly how you feel!
My brother has it to a much less degree than I do and 4 out of 5 of my children also have HHT. Anyway,
I am hoping you and I may get to have more discussions in the future. I'm with you... this is a pretty mild inconvenience considering what a lot of others have to deal with.
Many blessings upon you and your family!
Sandra H.
Wow! Amazing comment from Sandra. I did not remember that you had to deal with this, though I now remember you mentioning your frequent nosebleeds in our Spokane days. I'm sure that is terribly frustrating, not just for yourself, but that you passed it on to your kids. Sometimes when I realize that my kids have inherited one of my many less desirable traits, I feel kind of bummed out. But just remember that you have also passed on your wonderful kindness, empathy, passion for animals, musical gifts, ability to love, oh man I could go on and on. No worries about those kiddos! Just make sure they remember to carry tissues :)
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