#Tetralogy of Fallot

[anattempttostudyharder-blog]

Day 9/50

Studied 4 hours and 40 minutes

Went to the gym (died because I have not recovered fully)

Finished making notes for pediatrics

Studied pediatrics and ENT

//I need to work again from tomorrow so yeah. I've found a 'minimalist' gym routine to substitute for a few months because there is no way I can work, gym and study. Gotta make it work for the exam lol. Ngl my anxiety is through the roof about this exam//

[lakeofbl00d]

Made a sticker idea out of a joke I made to cope with disabled guilt, since half of my heart is swollen with excess blood backwashing into it due to my artificial valve leaking. I tried to include the sealed hole in my heart and the artificial [darker] valve too. Unsure if I'd ever put this up anywhere but was fun to make into a sticker idea.

[trashyswitch]

This bitch has been discharged!

Back home! The white sleeve is covering up the PICC line I got yesterday.

It’s called a Peripherally Inserted Central Catheter line (or P.I.C.C. Line).

It hurts a bit, but that’s to be expected.

And early morning on September 21st has been selected as my official surgery date! So…I have a couple weeks of free time to continue writing or drawing if I so please.

Thanks for all the support! I appreciate it so much! You’ve all been so patient and understanding, and I couldn’t ask for more.

~Pocket

[lelu3]

I need to scream into a void.

I got some bad health news. I was born with a congenital heart defect called Tetralogy of Fallot. Well, technically I was born with 2, because I have pulmonary atresia to go along with it.

It requires open heart surgeries. My last one was almost 11 years ago. At the time, they said my new part would be good for 20-25 years. We'll, at my cardiology appointment, they discovered my right ventricle is enlarge and my heart has decreased pumping power. One of the causes of this could be that my part is leaking. Which would mean another surgery much sooner than I was expecting.

I'm scared. I'm disappointed. I resent the hell out of the fact that my primary concern is how I'm going to pay for this.

I want to move to Canada. I want to be concerned with my health, not with how much debt fixing my BIRTH DEFECT will cost me.

Anyway.

Shout out to everyone out there with ToF, ToF-PA, and any kind of CHD. Thoughts, prayers, or a kind word would be appreciated.

[blue-deneb]

yeah open heart surgery is a pain but have you ever had to sneeze but not been able to

[lifeinkinder]

Little Man had his regular cardiology appointment yesterday with the local cardiologist (who has officially become his primary cardiologist even though that wasn't actually supposed to happen until after he had his surgery).

He asked me if surgery hospital had let me know the plan for surgery and I was like nope. So he explained that to me the when and the rationale behind why it's then instead of at 6 months. Surgery will 100% happen at 8 months - so we're looking at the end of November/beginning of December. On the one hand, that's an amazing timeline because if there are no complications, I'll use maybe 10-15 days of sick leave and FMLA time (I only have 19 days of FMLA left, so I won't have to juggle that). On the other hand, if there are complications, we'll likely spend on first Christmas in the hospital and that'll suck.

We talked about his intake and how he's still only averaging 14-17 oz a day which at almost 5 months is not ok. And he was like, who are you seeing for nutrition here, and I was like no one. And he was like ok, who at surgery hospital. And I was like, we haven't seen nutrition at all since he was in the NICU Which he apologized for. But like I don't blame him because this was the first appointment where he was officially the primary cardiologist So we have a nutrition consultation in a couple weeks.

I also mentioned the few times he's been crying where his lips have turned blue. And I was like I know he's not supposed to cry at all, but it's hard because he's a baby. And he was like, he can cry. I was like no, Dr. B said he shouldn't cry at all, his heart can't handle it. And he was like, that's for babies in heart failure. It's okay for him to cry. Because like you said, he's a baby and it's part of life. So basically I've been obsessing about my baby crying and feeling like an utter failure when he does cry and I can't get him to calm down for the last like 3.5 months and it wasn't necessary. Basically, he's not worried about the blue lips because it's not constant and it self-corrects within seconds so it's not a tet spell.

He doesn't go back until October because he's doing so well. Which going from every 2 weeks he was being seen by cardiology to now we're at 2 months without a visit unless something happens, which is amazing. That visit should be his last visit with our local cardiologist before surgery. Because he'll have a handful with the cardiologists and the surgery team at the surgery hospital before.

[lookingforstraymagic]

Happy World Congenital Heart Defect Awareness Day!

Our fucked up organs haven't sent us to the grave just yet, so let's get chocolate, no matter what.

[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…

[dusketo]

God had to nerf me by giving me turner syndrome 😾

[phindia]

Congenital Heart Disease Expert in Andheri (W) - Mumbai Did you know that CHD is the most common birth defect? With a birth prevalence of 9 per 1,000, it is estimated that more than 200,000 babies are born with CHD in India each year. You should visit the best Congenital Heart Disease Expert in Andheri (W) immediately.  

Dr. Prashant Bobhate has been helping people with heart problems for twelve years. He's really good at using special tests to look at hearts (echocardiography), and he can do many different kinds of procedures to fix heart problems, especially ones you're born with.  Schedule your appointment today.

[strange-aeons]

I want you to know that Andy Thanfiction might be legitimately insane but I do have a terminal heart condition that caused me to stop growing quite early. I'm 4'10" at almost 25 because my body couldn't keep up with pumping blood to anything bigger than that. So YEAH that isn't fake he just. Doesn't have it lol.

If you're curious, I have Alagille's syndrome and tetralogy of fallot with severe persistent pulmonary hypertension. Anyways andythanfiction suck my ass

^^^ Thanfiction suck their ass ^^^

And thank you for informing me about this!!

[cripplecharacters]

hi! i'm in process with my book, and i really wanna give one of the antagonists a rollator as his main aid. i'm disabled, i use a cane, but i daydream about rollator so. that's why.

the question is. what conditions in your mind lack representation? i have no problem with researching, but i lowkey don't want to just give him my experience. thank you!

anon MM

Thank you for your ask! Personally I believe every disability lacks representation, as disability shows up extremely infrequently in media and even when it does it’s often shallow and poorly represented.

One thing I’ve noticed in media is that when someone uses a mobility aid it’s often due to an old injury, amputation or muscle weakness. There’s nothing wrong with giving a character one of these, I just think it would be cool to see someone using an aid due to a limb difference, a heart or lung issue, a brain condition, or to help with fatigue or dizziness. There are a lot of reasons for someone to use an aid and I’d like to see them represented!

Here’s a short list of disabilities I’ve never seen represented that could cause someone to use a rollater:

camurati-engelmann’s disease

congenital genu recurvatum calcaneovalgus

bilateral peroneal neuropath

nail-patella syndrome

tetralogy of fallot

arthrogryposis multiplex congenita

cardiomyopathy

You don’t have to use them, but since your question can also be read as asking for specific underrepresented conditions we decided to include them :) (smiley face)

Before I finish, I noticed you said that the aid was for an antagonist. Please make sure that you aren’t falling into the disabled villain trope by giving some of the protagonist characters disabilities as well. Keep in mind your antagonist also shouldn’t be the only character with an aid or visible difference (if you choose a condition that causes visible differences).

Have a nice day!

Mod Rot

[trashyswitch]

I Owe You All an Explanation:

You all keep asking about Luigi's Secret updates. And there's a reason I haven't uploaded it in a while. Something serious has come up. I am physically sick. Highlighted messages will shorten the explanation for you.

Back in July, I had to take a couple days off work because of flu-like symptoms. But I got better and went back to work with little issue. Off and on, I would get these days where I experienced flu-like symptoms. My bloodwork was coming back with really high inflammatory markers, which we assumed meant that I might be experiencing a flare-up of Arthritis. I got back on my pain meds and started taking Tylenol as often as needed to overcome the rest of the pain. On August 22nd, I got the day off work and went to my rheumatologist to talk about my inflammatory markers. A normal person's inflammatory markers are 3-10mg/L at most...and my inflammatory markers were 112mg/L. So when my rheumatologist walked in and looked at my joints, he admitted that "With how high your C-Protein (inflammatory markers) was, I'm surprised you're not swollen like a balloon! Something else is going on". He ordered an X-Ray and bloodwork.

On August 24, two days after my rheumatologist appointment, I got the x-ray and bloodwork done that my Rheumatologist ordered me, before going to work again. But at work, I was hit with another spell of flu-like symptoms while at work. I had assumed it was the arthritis flare-up again, so I took a Tylenol and pushed through work as best I could. But I ended up going home an hour early.

On August 25, it was confirmed that I have a bacterial infection. But no one could figure out where it was located as of yet. I felt physically fine, and that's all I really cared about.

On August 26, I felt great! Little pain, excellent mental health, got a lot done that day. I had just come back from Walmart with my Dad, when I found my mom packing up a suitcase in my room. She turned around and said "Your doctor called me and ordered you to be admitted to the hospital. There's a big chance that the bacterial infection is in your heart...and because you have a heart condition, an infection in your heart could be lethal. They want you on antibiotics right away." And...ever since, I've been in and out of hospital. I spend the morning in the hospital, before spending the afternoon on hospital leave to be at home. Then at 8pm, I go back to the hospital to get my next dose of antibiotics. I am still waiting to be admitted to Toronto hospital for an echo and a couple other tests. The type of infection they will be looking for on the echo, is called Endocarditis. And...things are up in the air right now. School arrangements are now also uncertain, as I was supposed to start college in a week. And I've been stressed trying to figure THAT out. It's...a lot. And it's frustrating. Though it doesn't excuse my lack of Luigi's Secret uploads, it does explain them. I'll try to upload chapter 17 of Luigi's Secret tonight to make up for it.

Thanks for reading. ~Pocket

[lelu3]

I actually got a good report from the cardiologist today! My blood pressure is down, my conduit is so mildly occluded and leaking that there's no sense in doing anything about it right now, and I lost a little weight! She doesn't want to see me back until a year! I really needed some good news, so this is fantastic. The conduit I have is only supposed to last for 10-12 years and this year makes year 12, so I'm hoping if the report stays good like this we can push another surgery for another several years.

[fix-me-sixteen]

huh. so is this like. a presentation for school or something

Hiw much you wanna bet I'm going to hell for this 😅

(Shhh it's fine I've had thus condition I'm allowed to make jokes)

why is the smurf picture covering the text though. certainly you're going to hell for shitty presentation creation skills /lh

[lifeinkinder]

Cardiology appointments are always a trip.

Today's fun new curveball:

Little Man's primary cardiologist isn't comfortable with the placement of his last stent. It's super low in his right ventricle which is an atypical placement.

We basically have 6-8 weeks (which is really 4-6 weeks at this point since the stent was placed 2 weeks ago) to have full repair surgery before his heart muscle grows around the stent and then it becomes a more complicated/risky surgery.

One of the two surgeons and the interventional cardiologist agree that the time to do the full repair is ASAP, so it's not as complex due to the stents (it'll still be complex because of his anatomy and size).

The other interventional cardiologist thinks we should wait until his o2 saturations tank again (I should add I don't think that's going to take as long as anyone wants. He's already drifted from the mid to high 90s to the high 80s/low 90s and it's only been 2 weeks).

His primary is going to present him in 2 weeks to cardiac conference to get the team's thoughts on surgery - ASAP or wait.

I feel like if the surgeon thinks it should happen sooner rather than later because of the stent placement in his right ventricle, then that voice should be weighted a bit more than the cardiologists.

He sees his local cardiologist on Monday for an echo and his monthly appointment. So I guess we'll see what he has to say, especially because he's always been team full repair at 3-6 months.

I feel like I should reach out to my AP and give her a heads up that its a possibility so that if in 2-3 weeks I find out he is having the full repair ASAP, she's not scrambling to get coverage for the beginning of the year (my new principal doesn't start until July 28/29 so can't reach out to her...also don't want my first email to be like hey my kid might be having open heart surgery at the beginning of the year, so I'll see you when I see you).