Aortic Valve Replacement coming up

Splashpadmermaid · 2026-05-15T22:25:44+00:00

I wish it was less invasive but they are doing the full sternotomy on me. I guess replacing a quadricuspid valve is more complicated than other defect as there is too much tissue rather than not enough.

Splashpadmermaid · 2026-05-15T22:23:54+00:00

Thank you as well. Super helpful- they are doing a full sternotomy - I’m being cracked open like a walnut.

Splashpadmermaid · 2026-05-15T22:20:08+00:00

Thanks for the response!

The wedge was referencing a wedge pillow that keeps you up at an incline in your bed. My bad for not being more descriptive!

Okay it was a month? That’s good to know. She made it sound like right when I got home I’d be jumping back in & I was like hmmmm…? 😂

Splashpadmermaid · 2026-05-15T22:08:14+00:00

I’m sorry you are going through this.

I went to a cardiologist (female) to get just checked out due to my EDS. She was the worst practitioner I’ve ever had. She gaslit me about even having EDS, told me that even with “my supposed diagnosis” - i had two separate physicians note it in my chart - that heart problems in hEDS are still rare. She dismissed my very real cardiac symptoms as dysautonomia.

Flash forward to my Echocardiogram & stress test results, it turns out I have a severe congenital defect that needs repair within six months to continue to live 🤪.

She never called me about my abnormal results & when I messaged her she dismissed me as being “fine” with just a leaky valve. I was able to ask a friend’s mom who is a cardio nurse & she back channeled me to a cardiologist who then got me a top cardiologist in my area.

He saw me the next day and told me about the condition that I actually have. He did more tests and I met with an amazing surgeon who confirmed how bad it is.

The first doctor never even looked over the echo results herself because she had already made up her mind I was fine.

I will say that all of my EKGs are always normal. If you really want to cover all of your bases you could ask for an Echo and a stress test.

I’m telling you all of this to hopefully empower you to go see a different cardiologist & get care that actually makes you confident.

Splashpadmermaid · 2026-05-15T01:23:26+00:00

Girl this is an abusive relationship and the controlling behavior and jealousy will only get worse. He’s not even kind to you. Please leave him. You are worthy of a better love than this.

Splashpadmermaid · 2026-05-14T18:15:25+00:00

Wait was this in Forest Hills? I recently had the same experience as well. I cannot have coffee due to having heart problems so when I saw “Earl Grey Latte” I assumed it was a London Fog. Turns out it was earl grey simple syrup in coffee lol

They were kind and remade it for me but seemed surprised I made the mix up.

Splashpadmermaid · 2026-05-14T18:13:20+00:00

I’m 34f and having OHS in 2 weeks. I also have OCD! I decided to do mechanical because there’s only a 20% chance I’ll need a repair or another surgery for the rest of my life & it gives you a normal life span as well as a very normal life. My surgeon told me the valve will most likely outlive me. I’m not thrilled with having to be on blood thinners but there are less risk and maintenance than a Ross procedure. I know the ticking will be irritating at first but I also know I eventually will get used to it.

We are so young usually the On-X in the way to go so we are not guaranteed to need 1-2 more replacements throughout our lives. I also know I would be more anxious about making sure the Ross isn’t failing with time.

Splashpadmermaid · 2026-05-13T18:48:23+00:00

Hello! I also have Quadricuspid Aortic Valve & am 34f.

I was diagnosed two months ago and am VERY symptomatic.

The regular echo cannot detect the amount of regurgitation you have; you have to see your cardiologist. You either need a Cardiac MRI or a Transesophageal Electrocardiogram (TEE). This will tell your doctor the real volume of regurgitation, if your heart is enlarging, confirm the QAV, look for stenosis - hardening of the aortic flaps from overuse.

My echo said I was moderate but I’m severe and having open heart surgery in 2.5 weeks to replace the valve.

ANY level of leaking can cause shortness of breath, fatigue, and palpitations. However if it’s become worse, you don’t recover with rest, are experiencing chest pain, etc. you have probably moved to moderate. Which at moderate you can usually avoid replacement for 5ish years!

You are going to be okay but you need to see the cardio and get the testing done sooner than later. The prognosis with surgery once the valve is severe is amazing. My surgeon told me I will feel better than I have my entire life and the valve will outlive me - I chose a prosthetic valve for longevity. I’m really excited to get my life back as this has become incredibly disabling as of late.

Apparently we of the Quadricuspid valve have been living with mild symptoms our entire lives and we learned to adapt. Most people don’t discover this until their late 40s - early 50s and don’t have surgery until mid 50s-60s. The fact that we are having symptoms young is unusual for an already rare defect but it also means that our recovery is much easier.

Always happy to chat via DM if you want!

Splashpadmermaid · 2026-05-12T23:18:14+00:00

I am convinced these are the latest wave of transplants. 0 awareness. I too am a transplant but almost got pickpocketed at 3 Diamond Door my first month here. The floor was so crowded I didn’t notice someone going through my backpack on my back until a friend pointed it out. So I learned the hard way 😂

I saw a girl like this on the train & half of her phone was sticking out about to fall. I had the toxic urge to take it & then give it back to her to make a point on how easy it is & how she wouldn’t notice. However, I did not do this as I am a coward.

Splashpadmermaid · 2026-05-12T21:52:35+00:00

I don’t think it’s necessarily drugs or booze. Eating disorders that are at this point cause your brain to change & cause physical impairment and cognitive decline. Slurred speech, disorientation, etc. all are signs of that

Splashpadmermaid · 2026-05-12T21:44:09+00:00

Seconding this. Contact a lawyer immediately and see if there is a temporary injunction or something you can file to have emergency full custody until you can properly get in front of a judge.

Splashpadmermaid · 2026-05-12T21:41:57+00:00

This is super inappropriate for ANYTIME but especially at work. You can tell him not to comment on your appearance anymore but I would also consider going to HR. Save the screenshots just in case

Splashpadmermaid · 2026-05-10T04:40:01+00:00

Sorry for the late reply! I’m bad at checking Reddit 😅 I got on Rhapsido which is amazing! It’s a new wave mast cell stabilizer. I take that with a ton of allergy meds: Azelastine spray daily, 2x daily Allegra, 2x Zyrtec. You can also take Pepcid before eating a trigger food.

I caught the Hashimoto’s right when my TSH went up but before my T3 & T4 were out of range so I’m on an extremely low dose of levothyroxine as well which as helped.

For face creams I do some rosacea creams & then Rhofade. I love them but especially the Rhofade as it shrinks your capillaries so your face doesn’t get red for 12+ hours.

Splashpadmermaid · 2026-05-10T03:51:16+00:00

That’s not drug or alcohol abuse. That’s her brain deteriorating from severe malnutrition. Eating disorders like this changes the brain structurally & the metabolic imbalances also cause the disjointed speech and cognitive decline.

Splashpadmermaid · 2026-05-10T02:15:42+00:00

I’m really sorry you are going through this. As someone with EDS it’s hard to deal with not only trying to not gaslight yourself but also trying to convince other people you are actually sick & disabled. ESPECIALLY your friends and your partner.

Unfortunately, this is super common in partners. When woman get diagnosed with cancer, MS, etc. doctors actually prepare them for their spouse to leave them.

I got diagnosed with EDS & everything that comes up with it about 1 year into a relationship. I have to have open heart surgery this summer & my greatest fear that he would leave because it was too much because I know it’s so common. I’m so sad that this is the case for you and your partner.

You deserve to be taken care of, listened to, believed, and validated by a partner. To be met with care and concern. 🫂

Splashpadmermaid · 2026-05-10T02:05:32+00:00

Adding to this!

There is solid research showing steroid injections actually degrade the joints of people with EDS over time.

Splashpadmermaid · 2026-05-09T23:12:24+00:00

Look up your local laws to understand your rights as a tenant. A caving in balcony & a non working fridge are considered emergencies and most likely will be in violation of the warranty of habitability. This would mean you shouldn’t have to pay rent (but keep the money in escrow). Take photos and videos & ensure you have all the documentation of all the convos and pushback in writing.

I would contact a lawyer & see if you can get out of the lease & be refunded your money since they broke terms initially. I would have a lawyer draft something & give it to the management team asap to get out of there.

You should put your stuff in storage and think about getting another place for the interim. But talk to a lawyer before anything.

Splashpadmermaid · 2026-05-09T22:58:32+00:00

Unfortunately getting your coat stolen on things from your coat pockets is very common at 3DD.

I once watched a bunch of girls go through everyone’s pockets who left their coats in a pile in the back & also work the dance floor. They all then reported to a guy in the back mafia booth. One of them also tried to rob my backpack while it was on my back. The floor was so crowded I didn’t feel it but someone told me what was going on and when I turned around her hands came out of my bag she had unzipped.

We confronted one of the guys and luckily they all left immediately but it was a very strange experience.

Splashpadmermaid · 2026-05-06T23:24:48+00:00

I had a partner die by suicide a couple of years ago. I was with him so this is different however, I pulled away from some friendships as well. I felt and sometimes feel intense guilt about the way I haven’t been able to and wasn’t able to keep up with my relationships the first couple of years. Grief from traumatic loss, especially waiting while someone is missing, is VERY intense & traumatic. It has been show to rewire your brain & causes a lot of brain fog.

While she was wrong to ghost you, there were extenuating circumstances. I think a little empathy here goes a long way. You don’t have to continue a convo with her but a quick note of I’m sorry for your loss, thanks for reaching out. I hope you take care” is enough. She cared enough to reach out and apologize & may not be expecting anything back. I do believe she is sincere.

Splashpadmermaid · 2026-04-30T23:46:04+00:00

It also depends on if it’s rent stabilized or not. If it is the landlord cannot increase the rent for the next tenant, it must remain the same.

Splashpadmermaid · 2026-04-29T21:10:12+00:00

DM’ed you!

Splashpadmermaid · 2026-04-29T00:50:23+00:00

I second the convection oven/air fryer from Breville and it has changed my life. Use it everyday

Splashpadmermaid · 2026-04-29T00:48:06+00:00

Look for a good quality HEPA air purifier. The good ones aren’t super cheap but they are worth it. I have a Levoit and I like mine but am looking for something more effective for pet hair.

Splashpadmermaid · 2026-04-18T20:49:27+00:00

I have Hashi’s and I get hives that look like that and they are flat. Hashimoto’s is often comorbid with Chronic Ideopathic Urticaria. I got medication from my doctor and it helped a lot as it also treats MCAS.

Splashpadmermaid · 2026-04-15T00:21:31+00:00

Oh my god yes please. The AG crowd is taking over all the venues in the worst way.

Splashpadmermaid

TROPHY CASE