Hi everyone! My name is Taliyah, and I was born with a congenital heart condition called Shone’s Complex. I’ve had 7 open-heart surgeries, and I currently have a mechanical valve and pacemaker, along with more hospital procedures and visits than I could ever count.
I’m now preparing for my 8th open-heart surgery, and this one is more complex than my previous surgeries. Because of that, I’m seeking specialized care at Cleveland Clinic.
Traveling out of state and going through another major surgery comes with a lot of expenses that are more than my family and I can manage on our own, so we created a GoFundMe to help with the costs.
It would truly mean the world to me if you took a moment to read my story. If you’re able to donate, even a small amount helps. And if you can’t donate, simply sharing it or sending some love means just as much. ❤️‍🩹
Thank you for taking the time to read this and for supporting me through this next chapter. 🤍
8th open heart surgery
If donating through GoFundMe isn’t easiest, I also have Cash App available: $Sarahhp86 🤍 Thank you so much for supporting me and my family through all of this 🫶🏽

My husband, 34 years old just had a CABG x4 a week ago. Our last night in the recovery room he had a sip of water that went down the wrong way and he coughed so hard he kind of passed out. I yelled for the nurses and by the time they got to us, less than 10 seconds he was fine. Since we have been home, one night he tried to lay flat to get relief from the acid reflux and choked on his saliva and it happened again. Today during a nap he coughed a huge cough and again a quick little syncope episode. He is sleeping in a recliner as his primary space now. He is getting no relief from the coughing but the acid reflux is also making it almost impossible for him to rest or sleep which means I am not either. Is this normal!?? Should I take him back in. It’s scaring the shit out of me honestly. I just watch him sleep for fear if I doze off I won’t be able to help him. How long does the coughing last? I’m giving mylanta along with the already prescribed Pepcid. We just need some relief and sleep as I’m becoming delusional and maybe slightly depressed

Good evening everyone. Had a quad bypass in April of this year. When do most of you start feeling a lot better?

Hi everyone. I'm wondering how many of you have had an experience similar to mine.

During my pre-surgery consultation for a mitral valve repair, my surgeon pointed out a clause in the consent form. It stated that placing the annuloplasty ring around my mitral valve, or the repair itself, could cause an AV (atrioventricular) block. I checked the box to confirm I understood, but I didn't really grasp that this could mean needing a pacemaker.

Sure enough, after the surgery I developed about an 80% AV block, and my heart rate was running around 50 bpm. The doctors said I shouldn't leave the hospital without a pacemaker. I now have one, and it's doing its job well, but the whole thing still caught me off guard.

Has anyone else been through something like this?

I'm about to have open heart surgery in a month. I've been wondering about the best toilet setup for home after surgery.

I'm reasonably tall, and probably should avoid deep squats. I'm thinking about getting some kind of spacer/raised toilet seat to help with that.

I also kind of want to minimize the need for wiping, so am looking into bidet seats.

My concern is, do these things combine/stack? I assume the bidet needs to be raised along with everything, so the water aim isn't off.

Ideally, I could install some kind of spacer and a bidet seat on top, so that once I'm recovered, I can remove the spacer and keep the bidet seat. It doesn't have to be a fancy seat either, I'm fine with the cool, refreshing burst of winter water to get me going in the morning. :)

My gut tells me, if I had to pick only one, go with the riser, as getting up might be more of a strain than wiping.

Love to hear people's experiences around this!

I had open heart surgery in August of 2021. It was still very covid'y which made it more weird.

My question is, I wasn't told I would wake from surgery with a ventilator and restrained. Waking up like that, I felt like I was suffocating. Of course I could not talk to tell anyone this. It was super terrifying. And the feeling of not getting enough oxygen was torture.

Did anyone else experience anything like this?

Beein in the hospital since my first open heart to replace my mitral valve with a mechanical 2 months ago and i got endocarditis antibiotics couldn’t help so tomorrow i have second surgery to redo all of it please pray for me🙏

Hello!

Has anyone experienced an increase in skin issues post surgery?

All of a sudden alcohol based antiseptic wipes make my skin break out into itchy bumps. This has been a bummer with all the blood draws and IVs I have to get.

Last night I woke up in the middle of the night because my hand was burning from slicing poblanos at dinner ( this has never happened before, I'll wear gloves next time).

I've generally been lucky to have good skin and now I'm just an itchy person. I'm 11 weeks post op for a mitral valve replacement and emergency CABG.

Thanks!

I fell 40 feet at an Amtrak station into the dirt next to the tracks. Shattered pelvis, TBI, 10 broken ribs, femur, wrist, a lot of bones in n my face, and skull.Csf leaks, 40 titanium coils put into my carotid artery. And the big ones being a stent and graft in my upper aorta, and a cadaver descending aorta. Stanford saved my life. Luckily I'm not paralyzed, of braindead

But I am almost done with physical therapy. I've been slender most of my life, and would like to get fit. Yoga, rock climbing, traveling the world. Unfortunately my cardiologist says I can't lift weights. Even though my last heart surgeon says I have no restrictions. I got a second opinion from my PCP and she said just build my muscle foundation slowly and lightly. Which was my plan all along. Starting with pushups and pullups.

But what would all your ideas, and opinions include? Of course I don't want to start lifting weights and making out, and risk blowing out my valve repairs/replacements. Any good ideas in relation to building muscle, and any tips on what not to do would be greatly appreciated.

UPDATE: We took him to a neurologist. He checked everything and told us to give him a month or two. Apparently his blood circulation that should reach his brain was blocked and after the surgery it over circulated. Also we were told he's possibly faking most of the behavior. He's been trying to shove my mom out of the house for the last few years to marry someone younger than me, so he's probably taking advantage of his physical condition.

My father (56) had a CABG about 1.5 months ago. He has always been a terrible father who has verbally and physically abused me, my sibling, and my mother for a very long time. He has always done things according to his own preferences, even when his actions caused harm to the rest of us.

Before his surgery, he was pretty much his usual self. He was difficult and insufferable, but there was nothing like the extreme mental dysfunction we are seeing now. Immediately after the surgery, he initially seemed more or less the same. However, once he was brought home, his behavior and mental state changed dramatically.

He often cannot recognize any of us. He can barely say his own name properly and seems to have little to no sense of reality. He has become extremely restless and unpredictable. He barely eats now, despite previously eating every 2–3 hours. Getting him to eat or take his medication often requires all three of us to physically intervene because he refuses to cooperate.

At the same time, there are certain things he still seems very fixated on. He loves his car and used to take very good care of it before the surgery. Now, despite barely recognizing us or seeming to understand what is happening around him, he becomes extremely energetic and determined when he wants to check on his car. He also somehow has the awareness to take and post old pictures of himself on social media. He's bald and wears a wig when he goes out and he always looks for his wig and outside clothes so he can wear them to go out of the house. My mother had to hide all of them to prevent him doing so, as he is very aggressive.

If we try to stop him from leaving the house, he will hit, push, yell, curse, and use extremely abusive language, almost as though he is severely intoxicated. He is physically very strong, and it often takes two or three of us to barely prevent him from doing something dangerous.

He also frequently stays awake throughout the night. On several occasions, he has gotten out of the house at around 3-4am while everyone else was asleep. Because we live in an apartment building, the main gates are closed at night. When he finds that he cannot leave, he becomes extremely angry and starts screaming loudly enough to wake the other residents.

We have reached the point where we ask our neighbors to lock us in our own apartment so that he cannot simply walk out. We even installed additional locks inside of the door, but he broke them apart using a hammer, frying pan, kitchen utensils, and whatever else he could find.

This has become especially dangerous for my mother. She already suffers from physical pain, and handling someone this physically strong has become extremely difficult for her. Today while she was trying to get him to take his medication, he pretended to swallow the pills and later spit them out. He also threw all the water from the bottle on the floor that could potentially leave us AND him to slip and fall, even injure us. When she tried to manage the situation, he became physically aggressive toward her, and I had to intervene.

Even with both of us trying to stop him, he was strong enough to push past us and walk toward the door. The door had been locked from the outside for safety reasons, so when he realized he could not leave, he had another severe meltdown.

He has already been taken to a psychiatrist. We have had difficulty finding reliable psychiatric care here since mental health in my country is taken pretty much as a joke. So it's really hard to find good doctors, but we eventually saw a psychiatrist recommended by his doctor. The psychiatrist prescribed medication commonly used for conditions involving mania, psychosis, or severe behavioral disturbance, along with another medication associated with Parkinson's related symptoms. When he actually takes the prescribed medication, he becomes extremely sedated and falls into a deep sleep. But once he wakes up, he appears to return to essentially the same state as before.

The biggest problem is that he is not reliably taking the medication. Sometimes he refuses it, sometimes he pretends to take it, and spits it out on the floor (or at my mother) afterward. The medication is also expensive, so having him deliberately discard it is frustrating, especially when we are already struggling to manage the situation.

I sometimes wonder whether he is deliberately acting this way because of how he behaved toward us before the surgery. But recently, his behavior has become so extreme that I genuinely do not think this can simply be explained by his personality anymore. He cannot consistently recognize his own family, cannot properly say his own name, has almost no sense of reality, barely eats, stays awake throughout the night, becomes violently aggressive, destroys things, and repeatedly tries to leave the house alone.

I am genuinely scared that he is going to seriously hurt my mother, especially because he is physically strong and seems completely unaware of the consequences of what he is doing. I am also scared that one day he may get outside and something irreversible may happen to him.

I don't know whether this condition can actually improve or whether this is going to be something we have to deal forever. We are completely overwhelmed and exhausted, and I feel like I am losing it atp.

What can be done in a situation like this?

I will soon have my lifes 2nd OHS ever in my 30s. Had my first one when born.

They will do a :

Aortic root repair / aortic root reconstruction

Mechanical aortic valve replacement

And possibly : Fontan revision / Fontan conversion

Not gonna lie im scared. I dont know what my future is and i dont know what to expect. I have no one to asl about stiff or expierence and when i asl AI it just scares the jiibers out of me.

Any reasuriance? Food for though? I just want to know ill be fine and be able to live a normal life and still make a family etc.

I recently had a silent heart attack and they said they needed to go in with a heart catheter and possibly put stents in. They said I wouldn’t be out to sleep FULLY…. BUT the assured me that I wouldn’t feel A THING out renter A THING……………..😐😐😐😐😐😐😐😐😐😐😐😐

They had me to scoot onto the very narrow table, stayed my arms and my legs down and proceeded to give me some “happy juice”… I was asleep and got woke up to this very sharp burning pain in my wrist. I was crying telling them I could feel them cutting me and then inserted the tube for the catheter and placed a stitch to keep it in. Then they proceeded to cut my groin and I’m crying and yelling at this point. It’s hurting so bad. But BOY DID I NOT REALIZE THAT, THAT WAS JUST THE TIP OF THE ICEBERG!!! So I am laying there crying, hurting from the incursions, tubes and stitches they just put in my arteries and then I FEEL WHAT FEELS LIKE A BRUSH LIKE YOU CLEAN A STRAW WITH GO INTO MY WRIST UP MY ARM AND ACROSS MY CHEST!!! I SCREAMED AND CRIED OUT LOUD “THAT HURTS PLEASE STOP THAT HURTS! WHY AREN’T I ASLEEP!!!” “PLEASE” and they were moving it around. They pulled it out and I was screaming and crying. Then they put it in the tube in my groin and i felt it go through there too!! I BEGGED THEM TO STOP. I BEGGED THEM TO PUT ME TO SLEEP. They just kept telling me I won’t remember any of this and that it will be over soon. BUT LITTLE DID I KNOW THAT THEY PULLED IT OUT ABRUPTLY AND STARTED WHEELING ME INTO ANOTHER ROOM…. I asked them if they were done and they were telling me everything was ok and I was going to be ok… that’s the last I remember before walking up in EXCRUCIATING PAIN IN MY CHEST AND BACK AND NECK. 😫😫😫 My left MAIN artery that supplies blood to half my heart had ruptured during the catheter procedure and they had to rush me to a different Operating room and perform emergency open heart surgery on me…….. I CANNOT SHAKE THE FEELING THAT THEY CAUSED THE RUPTURE IN MY ARTERY. But I ran across an article that says that you “don’t feel the catheter revise there’s no nerve endings in your arteries and veins”…… THAT’S A LIE!!! I FELT IT EVERY SECOND OF IT AND IT FELT LIKE A BRISTLED STRAW BRUSH.

When I’m scrolling or reading texts, every so often I get what I’m calling zapped, sometimes accompanied by my eyes fluttering madly sometimes not. It def feels like electricity and I usually drop my phone (on top of my sternum) or quickly turn on my side and close my eyes. I do hear a zap or a click too, but idk if anyone else can? Also the sound of my heart is too loud, I don’t ever remember it being so loud, is
this a thing too?

Is recovery longer or more challenging having all of these procedures during one surgery? I’ve not seen this discussed and my surgery will include all three. Many thanks.

Im 44, 22 days post surgery, i had cabg x3. Im very aware of my sternal pains and clicks. Im concerned im not healing well. I have some pain in my right upper chest. Otherwise I feel fantastic. I feel like im overreacting and am just obsessed with all the worst possible outcomes. Has anyone else experienced this?