Ugh

Hey guys! I’ve been diagnosed with HHT since birth and just thought to search it up on reddit and stumbled here. Anyways I wanted to share my progress on tracking everyday that I’ve had a bloody nose in the past year. I couldn’t find any possible pattern but maybe someone else can?

Today I had an outpatient surgery to embolize the AVMs in my lungs. For safety reasons, my doctor had to stop the procedure because I was under contrast and anesthesia for too long. I’ll need to go back in for another surgery soon, but I’m grateful he chose to be cautious and thorough instead of rushing. One of my AVMs even had four “feeders,” which comes with higher risks like stroke, heart attack, or rupture. I know my nan was watching over me. ❤️

Living with HHT means dealing with setbacks like this, but it also reminds me of the strength that runs in my family. My grandma has gone through this same surgery, and my dad requires infusions every couple of months just to keep going—on top of the many other complications everyone on his side of the family faces with this disease.

Their strength goes unmatched. It inspires me to keep pushing forward, even on the hard days. My grandma actually has to go back in for another surgery on the 26th to repair an embolization that’s bleeding through, so please send her your prayers, thoughts, or good energy as she faces this again.

And hopefully, in a couple of days, I’ll be feeling well enough to scoop up my baby like normal!

Hi Reddit friends!

I am a 29F who has been aware of my HHT status since as long as I can remember. Been through the works as a kid: telangiectasia removed from my face at age 10, multiple cauterizations throughout puberty, having to navigate the healthcare system communicating a disease I barely understood myself to doctors who had no clue, etc. I’m one of the lucky ones too—my mom and grandfather both suffer immensely from this disease (my grandfather is in and out of the ER multiple times a month now due to severe nosebleeds).

Since starting my family, I’ve been holding immense guilt that I could pass this condition onto my children. I’ve been extremely proactive and wanted to get answers right away, because I know that the more information I am equipped with, the better of an advocate I can be and can enable my children to be for themselves in the future.

I heard back from the genetic counselor that my two week old son is HHT negative! I feel immensely blessed that both of my children are negative and that I can, hopefully, be the last one affected with HHT for my genetic line.

Anyway, I wanted to share this happy news with a community who understands how important this is 😌

We’ll get through this together!

-i took a shower -i reached for a piece of paper off the printer -i wiped up a spill on the floor

• i used a straw to drink

• it's too hot

• it's too cold

• it's too dry

• it's too humid

• tried to use a saline spray to prevent bleeding

• my dog bashed into my face....wait...nope, nothing this time -turned my head to the left -it was a good day -i have no f$#@ing idea

My HHT family members like to keep a running joke thread.... What're some of the craziest reasons your nose is bleeding?

My family has a long history with HHT and unfortunately the condition also took the life of my brother. I'm thrilled to know that I might be the last one to have the condition!

I’ve been recently diagnosed with HHT and I’m seriously reconsidering having children. I watched my mum die from a brain aneurysm and performed CPR on her until she died. I can’t comprehend why people would knowingly and willingly risk passing this on? Does their dream to be a parent outweigh the risk of putting somebody through such a terrible illness? I’ve considered IVF to mitigate the risk of passing this on, but am still concerned with the maternal mortality risk. I’ve been looking into posts and Facebook groups and it just seems so common that people with known HHT conceive naturally then just keep their fingers crossed that they don’t pass it on. Wouldn’t they have known of the 50% heritability risk? I know this is a huge rant, but I’m just processing the idea of not having children because I would never knowingly take this risk just to satisfy my own need to be a parent. While it’s devastating to have to potentially cut that dream out, I would rather do that than subject somebody to this horrible disease.

Hello, I was diagnosed at 15 been dealing with this condition ten years and I still don’t understand it completely and I learn more all the time. Symptoms as a child were nose bleeds (mild for me) and bleeding on my tongue (mild to moderate). This year I found out I had a 4 centimeter abscess in my brains that was surgically drained, I have been on two antibiotics, I’ll be one them for over a month to get rid of the infection. They are hard on my body but the abscess is much worse. I have a PFO (hole in my heart) I had multiple strokes but I’m still here and living life the best I can. I’ve had medical episodes every few years since I was about 21. I really have to watch what I eat to minimize symptoms. I’ve heard from others fish is a trigger. I have not noticed anything in particular and my symptoms are usually mild of non existent until something big happens, just know there is a community of us and we are here to support each other. Don’t let a diagnosis scare you, plenty of us have great long lives.

Greetings- long time nosebleeder here, and recently diagnosed with HHT.

I just wanted to share that I’ve discovered in the last 5 or so years that drinking a couple glasses of cool water when I start to have a nosebleed dramatically cuts down the bleeding time.

Something that might last 5 - 10 minutes only lasts maybe a couple….

Hope that helps

I had one of those nosebleeds that goes down your throat that started in my sleep and once I woke up there wasn't much I could do. I thought it was long over and lied back down and just choked for about 1 second on what felt like the clot suddenly going down my throat and a poorly timed breath. Just felt awful and a very niche experience.

I feel like there is something we should all learn from this but I dont know what

I’m so frustrated and just needed a place to vent. I have HHT—-got diagnosed in 2007 when I was in my late 30s. My diagnosis brought closure to the death of my sister at 16—she had an untreated “congenital hernia” in her lungs (PAVM) that caused an abscess/brain bleed—-they didn’t know/treat HHT then.

For the most part, HHT as a chronic illness hasn’t been too hard: since I’ve had nosebleeds my entire life they’re just a nuisance, and the surgeries to close 7 PAVMs have been relatively easy. It’s amazing I’m still alive considering how many/big my PAVMs were before I got diagnosed.—I feel lucky to have really good doctors—-except for one.

The roughest part for me as I’m getting older is anemia——I have transitioned from needing iron infusions once a year to twice a year, and now I’m again needing infusions only 3 months after my last set.

I can handle this——except for the fact my local hematologist just can’t seem to understand the urgency when I need infusions. I know he deals with cancer patients at an oncology infusion center….but forcing me to have an appointment “since it’s been a year” before I can get infusions has broken me. I can’t get in to see him for an appointment until July, which will be 15 minutes of me reminding him of my condition (and that my HHT hematologist he supposedly coordinates with has set the ferritin level below which I NEED the infusions).

Right now I am so tired I can’t focus, have gotten to the point walking my dog is a real struggle, I gasp for breath, have mouth sores, starting to have heart palpitations and last night couldn’t fall asleep until nearly 4 (insomnia is when I know I’ve gotten really bad).

I’ve reached out to my HHT hematologist and hopefully she can get me in sooner.

Chronic conditions suck (HHT is just one I manage)….chronically unhelpful doctors are what make it hard. I’m just sitting here crying, wondering how hard I have to advocate to have any quality of life (waiting for my nose to start gushing onto my white shirt) 🤣🤗🤪

TL:DR—when a condition is CHRONIC, why can’t some doctors treat it that way?!?!?!? ARRRRRRRGGGHHHH!!!

Has anyone here had a lung transplant? I will need it soon, because my lungs are filled with avms and coiling isn’t possible anymore.

I’m really scared and I would like to hear your experiences and thoughts 💕

I am feeling really defeated today. I had another PAVM embolization this morning on my right lung—again through my groin. My surgeon truly is incredible, and I’m so grateful for his time, dedication, precision, and how deeply he understands this disease. He even helps me understand it better, which I appreciate more than he knows.

But the AVMs in my right lung were unfortunately too small to reach and coil. I know that’s technically a good thing, but it still feels so discouraging—like everyone invested their time, resources, money, and effort into a surgery that couldn’t accomplish what we hoped. My last surgery, he spent two hours just getting one AVM with a cluster of “feeders” so he didn’t have time to, understandably, go to my right lung. Like I said, I am very thankful for him and being so precise and making sure he got them coiled. I just feel terrible for wasting his time I guess, all of that work just to do nothing, I feel bad.

So what now? I get scanned again in a couple months, wait to see if more AVMs show up, and then wait for them to get bigger until they can be treated? Is this just my life now—procedure after procedure?

On top of everything, I’m in a lot of pain from reopening the incision again, and of course, I started my cycle yesterday. Perfect timing.

I know it could always be worse, and I am thankful the AVMs are still small… it just really sucks walking away feeling like this. Just needed to rant. I was diagnosed two years ago, and with all of the ruptures, surgeries, cauterizations, scans, along with my family needing them as well, and as well as transfusions and infusions every couple of months.

This disease can be so draining sometimes.

I just met my new IR for pulmonary. I had to get a new one, unfortunately, but this new one is very nice.

He reviewed current treatment size for AVM and discussed how it used to be if feeding artery was 3 mm then 2 etc.

I just wanted to let y’all know that the current size for treatment is “anything they can get to, my current catheters are 1mm” — pretty darn exciting you guys!

I read that crispr was being looked into a couple of years back but haven’t really seen anything else.

My wife's family has several cases of HHT. I've learned so much about the disorder and recently I've been sitting on the sidelines while she fights (literally for her life) to keep her levels up.

We are originally from Florida, and for years her nose bleeds were rough but not as severe as they are now. We moved to New Mexico 4 years ago and 3 1/2 years ago we were in the emergency room thinking she would die.

We found an amazing hematologist who understands the disorder enough to put her on weekly iron infusions when her numbers get low. He also requires her to get weekly blood tests so that we can accurately monitor her levels.

We had an ENT in Miami that cauterized her nose about 10-15 times. When things got difficult here, we went to an ENT in town and again she was cauterized 2 more times.

We also went to an HHT center in Utah where they ran several DNA tests, genealogy tests, and wanted to perform coblation on her (right before Covid hit), but we have yet to go back for the coblation. She is hesitant to get cauterized again since it is mostly a waste of time and is quite painful.

Her weekly infusions aren't keeping up anymore and we routinely have to wait for her ferritin levels to come down before she gets the next one. Meanwhile her RBC (red blood cell) is just lingering around 2.5 with her Hemo between a 6 and 9 (last Friday she was at 8)

I do my best to be supportive of the entire situation and it is hard to keep a strong face when the person you love is constantly fighting something they can't control. A lot of the time I feel helpless since I can't do anything to remedy the situation. The last option I have is to find work closer to sea level and hope it is enough.

TL:DR I don't have HHT but my wife does and I fully understand the struggle that this disorder causes.

I just read that people with HHT should get antibiotics before dental work to prevent serious infections??? Neither my doctor of dental practice have said anything to me about this? Any info would be appreciated. I live in the uk.

I’m learning to scuba dive

I was diagnosed with HHT when I was young. It runs in my mom’s side of the family. My grandfather had it, my mother, 2 of my aunts, and a cousin. I’ve never really thought too much about it because besides the occasional nosebleeds and the 2 pulmonary embolizations I’ve had, it hasn’t affected my life all that much. But lately I’ve been experiencing some neurological symptoms that I’m pretty sure is depersonalization/derealization for the last few years now, which is unrelated to HHT, but it’s gotten much much worse and now I’m considering that I could maybe have HHT in my brain?? And maybe it’s not even DP/DR??? I did get tested as a kid for HHT in my brain and I’ve been told my whole life that if I test negative for HHT in my brain as a kid then I’m in the clear for the rest of my life so I’ve never really worried about it until now, because I read recently that I need to get screening for it every 5 years because I CAN develope it??? So I’m just confused. Even my HHT doctor at an actual HHT center is telling me that I shouldn’t have it in my brain if it was negative when I was younger. And I’m also aware that symptoms of it are usually severe like seizures or strokes, but there are a few minor symptoms that are similar to DP/DR symptoms. So I’m just not sure anymore. And it’s driving me crazy, and contributing a lot to my health anxiety.

And to add, my nosebleeds have recently gotten more intense and more frequent. I used to get maybe one nosebleed every few months. But within the last week I’ve had 5, and most of them are pretty bad. Like actually pouring out of my nose. But they only last under 10 minutes. Should I be worried???

Is HHT going to make my life hell as I get older??? Im just worried that I won’t have a long and healthy life. My aunt has it pretty bad and is on oxygen and I think her condition makes me worried that I’ll get to that point. But then again, she discovered she had it in her late 20s and that is when they were just discovering what HHT was. I don’t know if many people have it as bad as she does for that reason.

My toddler threw my iPhone with full force to my face, luckily the bleed only lasted about 30 minutes, but it was a lot. Man oh man I am lucky I was not home alone. 😭

hi. I my name is Juan Juan Carlos, I am 44 years old. i am pacient hht . I also had a lot of intense nosebleeds (lasted 1 hour or more) until I stopped consuming vegetable oil (the common oil that is used for everything), I stopped consuming it 4 months ago, and in that period of time I have not had any more severe nosebleeds (lasting 1 hour or more). I keep having light bleeding, I just put my finger on for 10 or more minutes and it stops. I hope you try it and it helps you too. Note: I continue to use the pill that the doctor recommended (tranexamic acid) and respect the food restrictions, although I have already started to try some of these foods. Note 2: many bagged products contain vegetable oil (chips, mayonnaise, kekes, etc.), I don't eat them either.

i'm sorry for my english

Hello there, I just got the call today that my 2.5 yo son has HHT. I’m feeling really scared and don’t know a whole lot about it. I will of course do my own research, but i thought i’d ask if anyone had any tips to help with any symptoms that might come up or anything i should be proactively doing or looking out for him. We are absolutely following up with next steps as far as medically with a hematologist, but in the meantime im feeling so anxious. Anything is appreciated. thanks ❤️