#congenital heart condition

[jamie-is-out-of-ideas]

shout out to all my fellow folks with congenital heart disease/condition who has to go to those anual appointments at the cardiologist (i had an enlarged right atrium and a funky looking tricuspid valve)

[literalcyborg]

Hey, can everyone start writing more characters with heart conditions so I can stop clinging to fanon Tony Stark and Rufus from Supernatural for dear life? I would really appreciate it :)

[little-lost-lamb]

They’re all ecstatic to have you back with them, now permanently. They like your horns, and they think your puffy sheep tail is adorable.

To clarify: Not which sin you would WANT to be, what sin do you think you ACTUALLY be?

Certified Sloth demon, here. 🐏

[pandoragigi]

me: I'm not disabled enough to say anything about this month :( also me: born with a heart condition, nose blind (0 sense of smell since birth), autistic, adhd, generalized anxiety disorder, nearly paralyzed as well but luckily got that fixed before it became a problem-

[phantalgia]

Sheesh, I cant sit up at my computer. My heart was acting up like crazy. Right now I’m nauseaous, lightheaded, dizzy, tight throat, shaky, heartbeat irregular, short of breathe, pre-syncope. Shit making me feel worse. Not sure if i feel any better laying down. Maybe in a certain position laying down i do. I don’t know. Staying in bed. Not going on computer. Fuck this. Still hate that i don’t have a full answer.

[charlottesharlottes]

sunday morning

[artemisbarnowl]

SOMEONE reblogged my undiagnosis post again kicking off a round of notifs but this person is winning the most correct opinion on my post so far

Like, we live in a world that is trying to make people unfocused and inattentive. The internet can and will give you symptoms that look like ADHD (and not the information that can help you get rid of them) and a sense of comfort and stagnation in this knowledge of HaViNg A cOnDiTiOn that will burden you and everyone you interact with. But if you decide you Don't have That you are free to grow as a human being unbound by the bars of a condition that is only defined by what is difficult and what unsettles other people.

[precambrianhottopic]

lost my baby cat frodo very suddenly if we've ever talked ive probably sent you a picture of frodo he was very special to me

[phindia]

Best Congenital Heart Disease Doctor in Andheri, Mumbai

Searching for the best congenital heart disease doctor in Andheri, Mumbai? Dr. Prashant Bobhate, a renowned pediatric cardiology specialist, offers comprehensive care with years of experience and a compassionate approach. His state-of-the-art clinic ensures accurate diagnosis and effective treatment. Trust Dr. Bobhate for exceptional, personalized care for your child's heart health.

[limitlessjourney]

Embracing the Invisible: Navigating Life with a Chronic Illness

Have you ever faced a challenge that seemed insurmountable? For me, living with a congenital heart condition has been the challenge. I was born with a hole in my heart, underdeveloped arteries, and a missing pulmonary valve. As a child, I was diagnosed with tetralogy of Fallot—a fancy term for my heart condition. My first surgery, a Waterston shunt, took place before I started kindergarten. At…

[literalcyborg]

Ok so the pacemaker tag is devoid of young people with pacemakers, so let’s aim to change that!

I have a pacemaker myself and it’s so hard to meet people who also have one and aren’t super old, BUT I KNOW YOU EXIST

[srirachaz]

one of my favorite stupid things about the shitty c-list cdramas i watch (and tbh it shows up in some of the nicer quality ones too) is when a character has some kind of incurable terminal disease that modern medicine is failing can be easily remedied with...

needles. like acupunture.

i think it's bc authors know jack and shit about medicine and can't be bothered/aren't paid enough by webnovel sites or drama producers to research specific illnesses and their treatments but it takes me out every time.

it makes sense in like...wuxia or xianxia, but when it's a modern drama it fuckin kills me. bonus points if the "modern" doctors are listening to wrist heartbeats to diagnose things like literal cancer or if there are magic chinese medicine pills that are complete cure-alls, OR if the "modern doctors" are surgeons (of all specialities, obviously) as well as general practitioners as well as specialists as well magically being renowned experts in chinese medicine and/or are like...nationally known but anonymous Secret Doctors or Magic Doctors or what-have-you.

[intersex-support]

Help an intersex family in Gaza!

Hi everyone. I'd like to share about a fundraiser that is very important to me. A good friend of mine is in contact with the organizers.

(Described in alt).

Their story:

"Hello, my name is Abeer. I'm organizing this fundraising campaign from Belgium on behalf of my family, who currently live in Gaza. 

Since October 7, all families in Gaza have been subjected to genocide. My family is one of those families that has had to flee its own home several times because of the threat of regular attacks. 

After two months, my family decided to return home and take the risk of being bombed at any moment rather than stay in the street. Our 4-floor building now contains over 100 people who have fled from different parts of Gaza. We always open our hearts for our own people, but we can't do it without your help and support. 

My parents, Kamal (53) and Moukaram (51), are suffering from the war because of their age and health. My brother Suliman, his wife Rawan Abualnaja and their two-year-old daughter Bisan are trying to stay strong, but it's complicated by their little daughter's enormous needs. My other siblings who are not married are Mohammed 25, Inas 22, Ibrahim 17, Abdallah 15.

My family medical condition during the war:

My father suffers from delusional disorders. He can't work or help my family financially. Mohammed and Ibrahim suffer from a chronic disease, congenital adrenal hyperplasia. It is difficult for them to obtain medication in Gaza. One of their medicines has not been available in Gaza for two years. During the war, they couldn't get their medicines because they simply didn't exist anymore. My family members are still suffering. They don't want to be potential victims. They want to escape death and live like other families on the planet.

 On 01/01/2024, they attacked the local mosque and the missile failed to explode and ended up in front of my family's house. My family is in danger and the missile will explode any second.

Since then, my family has decided to be evacuated from Gaza because of the senseless attack on our city. Please help me evacuate my family to Egypt so that they can rebuild their lives in peace.

I've been in Belgium for over five years. I feel useless because I haven't been able to do much except try to help them with their daily living expenses. That's why we created this campaign. We're raising funds to evacuate my family to Egypt, a place that offers a glimmer of hope and stability. However, the cost of the evacuation is high, hence our call for crowdfunding.

Every contribution makes a difference The funds we raise will be used for :

- Evacuation from Gaza for both families (Rafah border crossing fees for 9 people total)  - Two months of temporary living expenses in Egypt, including food, shelter, and transportation  - Passport fees  - Food expences untill they leave Gaza 

No matter how small your contribution, it can make all the difference in breaking the cycle of violence and uncertainty. By supporting our campaign, you are offering a lifeline to our families so that they can rebuild their lives, heal from their trauma and make a fresh start in a safe and secure environment. Please leave a comment and share our campaign with your friends, so we can reach more people and make a bigger impact. Together, we can make a difference!"

They are using a French platform called Papayoux Solidarite instead of GoFundMe. Abeer also has a Paypal account for non European donors.

They are currently at 33 588,78 €/ 50,000 €.

Let's see if we can get them to 34,000 today. Any donation matters, even $1 or $2 donations can add up.

We need to help them meet their goal. Intersex liberation means intersex liberation everywhere--it is so important that we show up in solidarity. Those of us living with CAH know how dangerous salt wasting crises are without medication, and how important it is to urgently help Mohammed and Ibrahim get access to the medications they need to support their CAH. Intersex solidarity means that we need to show up and support intersex people facing genocide.

If you can't donate, please share. Consider doing an art raffle to raise money. Do whatever you can to help this family because it is urgent, and we need to act in solidarity with them now and make sure that the intersex community is here to support them!

[phantalgia]

Navigating Unknowns: My Physical Health

There's a lot in this post but there's also a lot of stuff I have left out, some vital, some not so much. I feel like it's not a complete picture of everything but it's the best I have so far. As time goes on things will come together. I wanted this to be short. Which it isnt. So that's why I left out a bunch of stuff.

So, I'm currently writing on my phone laying down in bed. Throughout the day, including my earlier blog I haven't been feeling right. I’m kind of nauseous, my throat is tight, I’m short of breathe, and I just can't focus without this phantom pain sensation in my head that usually ends up turning into a real headache.

I had to lay down and here I am. This is something I've been dealing with forever. Maybe since I was 12. It's been explained away as "just anxiety" ever since. I know I grew up as an anxious kid, but it just didn't feel like it told a complete picture.

As I grew into my teens I started noticing that getting out of chairs was harder, and would sometimes make my vision go dark for a moment and give me a pressure sensation in my head. Staying upright in class was hard, concentrating was difficult especially after noon. And I would develop throbbing headaches, be deeply fatigued, and even sometimes feverish after school ended. All I would do after school is take not just a nap but a deep sleep.

As I got even older I developed random heart palpitations that would come and go without reason. I did get it checked and they were nothing to worry about except for how annoying and uncomfortable they were. This was until COVID happened.

COVID-19 Turned Things Upside Down

I don’t think I can stress enough how serious COVID-19 is. It's not "just a flu". It's a monster. I got Covid in December of 2022 I believe. Initially it did feel like the flu. That was until months went by and I started getting a faster heart rate, chest pains, dizziness, lightheadedness, shortness of breathe. It was like those sensations I had growing up but taken up to the next level.

I went through a whole process, saw my doctor went to a cardiologist and I was having afib and ventricular arrythmias. The latter being the most concerning. I got an MRI done and they discovered that I have a rare congenital heart condition called Left Ventricular Non-Compaction (LVNC). I had this the entire time and didn't know it. All of a sudden it made sense why I was getting palpitations, had a big problem with Covid, and just had an overall lower stamina. Or did it?

See, I got a PET scan this year, and what they saw was a normal functioning heart. I mean more than normal. However, this could be due to my heart medications working well. This does not mean that I'm completely off the hook with my heart as my condition does have the possibility of progressing, so I need it checked every year.

As it currently stands, I’m getting an MRI again of my heart later before the year ends for comparison sake. But other than that the expectations are that I will live a totally normal long life. My doctor has tossed my case around and had other patients that live totally normal lives into their 80s. But it still doesn't explain much and it doesn't account for the surprise that would await me in 2024.

Surgery and Long COVID Don't Mix Well

I had to get an appendectomy as well as get an extra lump in my intestines left over from birth removed in early March. At this time I was recovering ok from Long COVID and had a fairly stable heart. I was getting into my hobbies and stuff so things seem "well". I say that because I have been having a lot of mental health stuff that I'm struggling with and struggling to understand...something I'll get to in a later post.

On a Friday in March I was getting lower right abdominal pain, it was fairly bad that I went to urgent care and they recommended I go to the ER. And of course, hours later, I have appendicitis! I was rolled into surgery early the next morning, woke up and was told that they removed an extra lump left over from birth as well as my appendix.

I was stuck in the hospital for a few days and could you even believe that some people go home the same day after a surgery like that? I couldnt. I felt so beholden to those nurses. But I was determined to get better. And eventually I was sent home.

As the weeks go by it seemed like I was doing fine. I was still shocked from the whole ordeal. But I was doing ok, following the diet and nothing felt too different. Then after three weeks that all changed.

My New Life Begins

I had one bad night where I didnt sleep, drank a lot of water, and went for a walk. Then all of a sudden I’m extremely nauseous, dizzy, and feel like I’m going to faint. It was a day where I had to get my blood drawn too which luckily I got it done unscathed. But this became an ongoing problem.

I noticed triggers too, bad sleep, short naps, eating too much, eating processed foods, exercise, stress, being idle too long (standing, sitting, laying). Laying would feel the best but I noticed that prolonged bed rest just made me feel worse.

This became an every day cycle, and I noticed it accompanied a stomach ache and galbladder pain and just pain all over my abdomen. This isnt always the case. Sometimes I would just feel dizzy, faint and lightheaded only.

These episodes were so bad that I went to the hospital around 2-3 extra times. They always ended up turning me down. I even got a brain MRI which showed nothing, I mean one of those times I thought I was having a stroke.

Investigating this turned up as nothing so far. I got a full body CT scan which didn't show anything. And the running theories right now are stress from the surgery and possible stomach ulcers from it. I’m going to be seeing a GI doctor so I will learn more soon, probably will need an endoscopy.

COVID Strikes Again

And then I got COVID again. In the middle of all of this. I got covid once more. I was still having those episodes, bad enough where I thought I needed the hospital. But I pretty much taught myself each time they happened that "they always pass", which they do. But COVID scared the hell out of me. It was probably my scariest experience with it.

There were points where I definetly thought I needed the hospital. I couldnt stand up without feeling all my body weight drop, dizzy, faint. I was nauseous but afraid if I used the bathroom I'd faint. There were points where I couldn't get out of bed at all. I had probably an extreme fever and my lungs were in agony. Then all of sudden like magic, it just all stops. I got over it so quickly it was hard to believe. It was quick but agonizing. But I still wasn't left unscathed.

The Fallout of it All

It's August now, I don’t really have those episodes as much but my abdomen still has problems ever since the surgery, I wake up with nausea (which has been new since Covid), feverish, and shaky many days. And sometimes these symptoms go on throughout the day. The frustration is that some days are good, some are bad. Some good days just have bad hours, some bad days have good hours. Some weeks are good, some are bad. It's really the Shrodinger's Cat of being sick. I tried walking outside on my own in the heat but I got some problems with that. After exercising I'll regret it about an hour later and be having an episode. Or I'll walk too much, have tachycardia and have an episode. So, I’m just here now, beholden to doctors waiting for answers.

How This Connects to Long Term Problems

Part of the answers I’m looking for is how this all relates to long term problems. Outside of Covid, a surgery, and covid again, how does this relate to me long term? I mean, I've been having extreme fatigue, trouble getting up out of chairs, trouble standing or sitting in place too long, short of breathe, fever like, trouble concentrating, headaches for over 10 years now at least. What is up with that? At this point through my own research I've discovered POTS or Dysautonomia generally speaking as the closest answer. Upon asking doctors if that might be the case, it keeps changing. My cardiologist says I might have long term POTS but won’t test it. My doctor is always switching up his thinking with each visit. One appointment it's dysautonomia, another is just anxiety, then it's the surgery, it's covid, it's dysautonomia and anxiety. I don’t know at this point. My last appointment as of writing this was on a "good" day for me. I had no problems, and the discussion turned towards treating psychological stuff, unfortunately I can't see my psychiatrist as he had to get his ankle replaced and an eye surgery. So, now we're going after emotional and psychological stuff and trying to see what that is about. That requires its own post because it pretty much follows the same themes as this one. Which leads me to my conclusion.

Life Turned Upside Down

What do I personally think it is? I think it's comorbid. I think I was naturally born anxious, I think other congenital anomalies are also a factor. I think conditions in the womb affected it. I think my development in early childhood stress affected it. I think covid affected it. I think the surgery affected it. I think my own current psychological stress affects it. I think there's mental stuff that I don’t know about contributing to it. I don’t think there's a singular source to blame here. Which frustrates me because that isn't how I’m being treated by these doctors. I’m not being treated holistically. It's one thing at a time. Or abstracting. Or not treating me as human. Treating me as an input and output.

I love my primary doctor, I think he's the best doctor I've ever had but even I think he's still beholden to the oppressive, heirarchal systems and norms that govern medicine under capitalism. But he does do a lot more than most doctors. So I have to give him credit, especially concerning his own history. Something I may discuss at a later date.

I think I’m just frustrated, scared, alone. I don’t have an answer nor agency nor empowerment for anything and I feel sick on and off or just like this looming feeling of being sick. I don’t have a sense of solidarity or shared struggle in this. I’m totally alone. For all I know this could all blow over in a year. But what then? The "healthy" me wasn't any better.

Life has certainly been turned on its head for me because of all this and this isn't accounting for the psychological and social developments I've had too. This has affected how I see the world, see myself, see others. I don’t like what I see in the world because of this. I see something dreadfully wrong. But I'm not pessimistic, not entirely. I think there are things to look forward to. So I have faith in that at least. My therapist says that faith comes before confidence. It makes sense, you got to believe it first. I have faith that I will find people out there with similar struggles and similar mindsets some day. Perhaps we'll make a difference in each others lives and for others. Which gets into a whole other conversation I'll save for another time.

[sodacowboy]

yeah I don’t think showering should give me chest pain that only goes away once I sit down lmao