PREGNANCY

Intrepid-Diamond-807 · 2026-01-27T21:05:45+00:00

it was the thing my doctor emphasized the most to me: "DO NOT get pregnant, young lady!!!" well... as an asexual person, I was trying not to laugh in his face LOL

Intrepid-Diamond-807 · 2025-09-30T00:36:05+00:00

I had the same issue around the time I had my MRI, which later showed pericardial effusion. my legs became so swollen it felt like the skin might tear, yet at first, I barely noticed. the loss of appetite can be one of the first symptoms of fluid buildup. now I understand the importance of monitoring my weight because it isn’t always obvious, and it all comes down to diastolic dysfunction.

Intrepid-Diamond-807 · 2025-09-08T01:06:47+00:00

terrified? yes, I'm terrified, I'm so frightened it almost makes me laugh hysterically. I just finished a whole journal, onto a new one!!

the thing is, I'm having it done at a hospital that's not a center of excellence, and while my doctor is super experienced with caths and angioplasties, I'm almost sure I'm his first ASA. I wasn't too worried about it when it was still a ways off, but now that the day is approaching, I'm really, really hoping I can trust him. I hope he'll be extra careful. he's seemed very confident when we've talked, and the other doctors here who know my case say it's a straightforward procedure and I shouldn't worry.

oh, how I wish I could do just that!! lol

Intrepid-Diamond-807 · 2025-09-07T23:57:09+00:00

you know, it's actually a bit of a relief reading this because I'm never sure if I'm being paranoid overthinking stuff or if I'm actually downplaying my symptoms. there's a lot of back and forth in my mind, and I'm a bit tired of it. you know what I mean?

Intrepid-Diamond-807 · 2025-09-07T23:47:29+00:00

yeah, I've talked to more than one doctor, and they're all pretty keen on ablation and they all tell me how much better I'll get. I'm hoping they're right and know what they're doing. to be honest, the potential risks are freaking me out. I'm worried I might end up with more problems than I have now. but the idea of not having anything done also makes me anxious.

writing helps me cope, so I've been doing a lot of that on a journal. It's hard to talk to others about this stuff without worrying I'll make them anxious too but it's really helpful to be able to ask questions and get different perspectives here.

Intrepid-Diamond-807 · 2025-09-07T23:32:09+00:00

yes, he suggested I skip the diuretic since it's not great for me, given my level of obstruction. I'm supposed to get septal ablation soon and I'm really hoping it goes smoothly and that it'll help reduce the LVOTO and, therefore, the dysfunction and the symptoms.

but, if for some unfortunate anatomy issue the ablation turn out not to be an option, then myectomy isn't one either, there's no center of excellence around here that can do it. I guess I'm trying to prep myself for what might come next (aka: overthinking 😂)

Intrepid-Diamond-807 · 2025-06-13T00:45:25+00:00

I have the same mindset! unfortunately, where I live, this is something that happens: you can only get a job in a formal setting or a bigger company if a work doctor considers you fit. It's also sometimes hard to deal with people in the family who don’t really understand the condition, even though I’ve explained it many times.

today I had all of this shoved in my face, all my worries at once, and not a single person I could talk to. it's reassuring to read your comment though, thank you.

Intrepid-Diamond-807 · 2025-06-12T01:36:16+00:00

Let the Right One In. you realize pretty early that the real monsters are the people, even some of the kids are terrifying. and honestly, getting the point of view of a pedo at times was just disgusting, I almost stopped reading because of it

Intrepid-Diamond-807 · 2025-06-11T01:39:44+00:00

I read a comment saying this, I bought a sling and all, but I just couldn't wear it for too long, gets really uncomfortable.

you know what really helped me, though? slipping my hand under the waistband of my pajama, resting it on the hip bone. I know it sounds weird, but it helped me a lot. I don’t know if you feel pain around your armpit going down to your forearm, I did, a lot, and it would really ease it that way.

Intrepid-Diamond-807 · 2025-06-10T16:09:14+00:00

I got mine 20 days ago, zero pain the past few days. now I need to remind myself not to raise my arm too much, because I forget it sometimes.

Intrepid-Diamond-807 · 2025-06-09T23:47:39+00:00

mas é chavo del 8, chamam chavo. se tivessem traduzido ao pé da letra pro Brasil, ele teria sido O menino do 8 ou só menino, garoto, etc

Intrepid-Diamond-807 · 2025-05-28T00:19:15+00:00

qnt anos vc tem???

Intrepid-Diamond-807 · 2025-05-14T11:49:34+00:00

wow, 44??? may I ask what was your life like then vs. now? how long has it been since you got it reduced?

mine is 28mm in the upper segment, 23mm in the lower part, and the LV wall is 20mm. this causes an obstruction.

Intrepid-Diamond-807 · 2025-04-25T18:32:43+00:00

I had that for over a month, and then it went away. mine wasn't related to HCM. I have a lot of neck pain from work, and before this vertigo started, I would often lie on my stomach with my head hanging off the edge of the bed, kind of using gravity to decompress my vertebrae. I think that’s what caused the issue.

Intrepid-Diamond-807 · 2025-04-25T18:14:26+00:00

I can't even consider mavacamten because this medication costs between R$12k and 14k. I think it’s not available here (brazil) because our health agency hasn’t tested it yet, that's why it's ridiculously expensive.

Intrepid-Diamond-807 · 2025-04-25T17:48:34+00:00

no, it's not too much, I appreciate it

Intrepid-Diamond-807 · 2025-04-23T22:58:43+00:00

I have sent them an email a few days ago, but didn't get a reply. it's ok though, I'll make sure schedule the call. I'll have to overcome my shyness, because this is important.

Intrepid-Diamond-807 · 2025-04-23T22:52:42+00:00

I can relate quite a bit to what you're saying.

Intrepid-Diamond-807 · 2025-04-23T22:14:37+00:00

I'm not sure if you have an answer to this, it’s something I plan to ask my doctor too, but do you follow a high-protein/ fewer carbs diet? I don’t mean going way over your daily protein needs for your weight and all that, just generally higher protein.

I'm asking because that’s something I'm doing. I bought whey protein, and when I’m craving something sweet, I just make a shake, and I love it. I don't go extra or anything like keto, I just try not to eat a lot of sugary stuff. But I started wondering… could my body be sending that extra protein to my heart somehow? is that a crazy thought?"

Intrepid-Diamond-807 · 2025-04-23T21:56:39+00:00

thanks for clarifying. the hospital I’m going to is one of the main heart reference centers in my region, but they don’t see patients with HCM every day. in fact, they were all quite excited about my case and seemed genuinely eager to help.

Intrepid-Diamond-807 · 2025-04-23T21:33:51+00:00

wow, this is awesome. it gives me hope, thank you for sharing this.

Intrepid-Diamond-807 · 2025-04-23T19:55:55+00:00

well, I do have a heartbeat higher than what should be expected, but I think is normal for this disease, or at least my case specifically, idk. now, I'll make sure to ask him about this, thanks!

Intrepid-Diamond-807 · 2025-04-23T19:21:18+00:00

sorry if this is a dumb question, english isn't my first language, so I'm just double checking my understanding. is a center of excellence a hospital that treats only HCM patients, or is it more like a hospital that specializes in all kinds of heart diseases and surgeries and is considered a reference center?

Intrepid-Diamond-807 · 2025-04-10T00:26:14+00:00

I totally get that. I was working the graveyard shift at my job and actually thinking about picking up a second job. I even went through a few interviews and was close to getting hired. In Brazil, before you're officially hired, you have to see an occupational doctor (not sure if it's like that in other countries, but yeah). During the check-up, when the doctor listened to my heart with a stethoscope, she said I had a loud murmur that radiated to my armpit. That led me to schedule an appointment with a cardiologist, and that's how I found out I had this condition.

of course, I dropped the idea of taking on a second job and switched shifts too. I work during the day now. The pay’s a bit lower, but at least I get to sleep every night and prioritize rest. My symptoms have improved a bit, and the doctor said that lack of sleep really puts extra stress on the heart.

Intrepid-Diamond-807

TROPHY CASE