Ep. 46 Tanya experiences health care through the eyes of the patient- Hereditary Hemorrhagic Telangiectasia (HHT)
Tanya Tringali 0:00
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Hey, everyone, I'm your midwife, Tanya Tringali. Welcome to the mothership podcast, a show about the issues we healthcare consumers and providers face every day as we interact with the medical system. We'll talk about its blind spots, shortcomings, and share strategies we can use to feel seen and heard, no matter which side of the table we sit on.
Hey, everyone, I have had to cut this season short by three episodes, I was really looking forward to these three, and I may still try to bring them to you, I just can't commit to a specific timeline. But I wanted to make sure that I said that out loud to you guys, and gave you a little insight into why. I myself am having a little bit of a healthcare journey and finding myself on the other side of the proverbial table. It's complex. And it's been really interesting. And I'm actually thinking about doing a standalone separate podcast about it. So I'm sitting with that idea. But I'm still kind of in the midst of things. And I need a little more time to get through this and focus on what's really important. But it's been a nice use of my mental space to think about how I might turn my own healthcare experience into an opportunity to do some storytelling, about what it's like for somebody pretty knowledgeable about the health care system who helps people navigate it for a living, and is still hitting roadblocks and speed bumps and all the things I talk about with everybody. And it's in the context of stuff that's not women's health, just for a little background, so you know where I'm going with this if I decide to pull the trigger on starting another podcast, but I have a rare genetic disorder that I don't actually talk about very often, it hasn't caused me a lot of problems. And I've kind of let it go. But I let it go mostly because telling healthcare providers about it always made things harder for me as a patient, so I didn't share it, and then kind of blocked it out for myself. And there is a whole story that goes back generations in my family that relates to this genetic disorder. And it's moving its way forward into the next generation, my daughter also has this genetic disorder. And recently, I've been having some healthcare issues that interface with this genetic disorder. And I was sort of pushed by the nature of it all, to start to address this thing that I had pushed to the side for 43 years. So I'm sure you all understand why I've had to cut the season short. And I wanted to share that with you guys when I was ready. Thanks for your patience with me. Thanks for listening. And those of you who want to be in touch, you know how to find me. I'm still accessible. I'm working a bit less and focusing on myself right now something that needs to happen. And I'm hoping that in the end, I will bring you more great content content right here on the mother whip podcast. And again, quite possibly a whole other podcast, starting with the story of me and my family members and then opening it up to other family members, rather other families that are affected by my same genetic disorder and possibly more broadly, other rare diseases.
So I just listen to that back and realize that like I didn't tell you what the genetic disorder is, I told you enough that I probably should have just told you what it is because I'm sure you're wondering. So I'll give you a little bit of information about it. I'll put a couple links in the show notes for anyone who's particularly interested. So the genetic disorder that I and my father's side of the family have is called hereditary hemorrhagic telangiectasia. Big long word there, and it's abbreviated HHT so much easier to say. HHT is quite rare. It affects about one in 5000 people. It does not discriminate by race, or by ethnicity. It's pretty, you know, pretty equal throughout the world in terms of its distribution. About 90% of people who have it are completely undiagnosed. They don't know they have it. The most common symptom of HHT is nosebleeds, and nosebleeds and your other family members. So a lot of people hear me say that and they go, Oh, I got nosebleeds when I was a kid or my kid gets nosebleeds. Children do get more nosebleeds than adults, a lot of people in the world will say that and then they'd like outgrown it, you'll hear people talk about it like that. So if no one else in your family has nosebleeds and nosebleeds we're only had as a child, it's probably not this. With that said there is a genetic test you can get if you have suspicions, but there are other symptoms as well. So this big long word talengiectasia, our little tiny red dots that appear on the skin. That's another symptom. They are commonly in mucous membranes face hands, but they can be other places as well. Now, when it's happening inside the body, what we have are called Arteriovenous malformations, and kind of simply put, what that means and why it can be dangerous is that we kind of lack a capillary bed that should live between the artery and the vein so that your artery is pumping blood at a mighty rate and pace and with pressure. And the vein walls are thinner and don't support that amount of pressure will usually the blood is slowed down. In those capillary beds, think about how like big rivers get narrower and narrower. And then they empty out into the ocean or open up maybe back into another larger body of water. So things get slower before they get faster again. And in certain parts of our body, we don't have that. And that's what's going on with the nosebleeds. But other parts of the body that are really important can have these malformations. And that can be dangerous. And it can happen suddenly, if you don't know what you have. So the body parts involved can be commonly brain, liver, lungs, also throughout the GI system, rarely the spinal cord. So anyway, other parts can happen as well. But again, they're they're rarer. So I'm in the middle of a big workup for all of this and figuring out what I have going on. And you know what, so far so good, I actually so far do not have any arteriovenous malformations that are dangerous, I may, in fact, have some that are microscopic, that are not actually going to cause me too much of a problem. But, you know, I've got some other things going on. And again, there's a whole interface of some other health issues that I'm having that just kind of abuts this condition, which is why I finally started this whole workup. Anyway, the story of how long it took me to get here. The almost insurmountable things I've dealt with to get to the point that I'm at. And the confusing. The confusing things like insurance coverage, which I know you all can, can relate to. And some substandard care I've encountered along the way. And some missed diagnoses and all kinds of other things, I think make for an interesting story. And it certainly made me want to dig back into my family history and hear the more complete stories of some family members one in particular. Yeah, so there's a lot a lot here. I think it can be really interesting to share this story. And I don't think that people need to have a rare disease or experience with a rare disease to learn a lot about the health care system through storytelling of this nature. So anyway, that's where I'm going with this. So thanks again.
Are you pregnant or a new parent looking to ensure a better postpartum experience? Or are you a birth worker looking to improve your postpartum care skills? Check out Thrive Thinking after birth and online self paced course by me, midwife and educator Tanya Tringali. It's 10 and a half hours of video content featuring experts in lactation, mental health, pelvic floor health, pediatric sleep issues. You also get worksheets and a workbook as well as options to have a one on one session with me, sign up and Motherwitmaternity.com/thriving. And let's improve postpartum care together.
Thank you for listening to the mother whip podcast. If any of the issues we discussed today resonate with you or your experience, I'd love to hear from you. Leave me a voicemail at 917-310-0573 Or better yet, email me a voice memo at Tanya at Mother wit maternity.com. I really want to hear what worked for you what didn't work, what support you'd wish you had, how you got through the tough times how you advocated for yourself, or especially any tips you want to share with our listeners. I want to hear all of it. And if you'd really like to work together, you can get a discount on your first consultation with me at motherwort maternity.com using the code first consult 10% off. That's one 0% symbol all one word. Okay, that's all. It's wonderful being in community with you all. Thanks again for listening and see you next time.
And remember, listeners, nothing we discussed on this show should ever be considered medical advice. Please speak to your local provider about anything that comes up in this show that resonates with you and your needs and your health care.
Transcribed by https://otter.ai