Husband of chd patient needs advice and has questions. (Full story) (NSFW for medical details)

My wife has chd and I'm curious if she is over reacting or if I just don't understand.

(TLDR at the end)

The back story- My wife (F34) was born with chd I'm not sure what its called but it's the one where one of her valves was supposed to have 3 flaps or valves (?) but she only had 2. She had 7 open heart surgeries when she was between 4 and 11 years old. Her surgeries went smooth but they knew from then she would need more surgeries as an adult. She hasn't really said much about the time from 11 to when I met her in 2017.

(Edit: I was asked and realized I forgot to mention we got married in late 2018 and had twin girls in January 2020. Both healthy and no heart issues at all. I also believe her heart condition was called aortic valves stenosis.)

In 2022 she had a Ross procedure where they removed the bad valve completely and replace the valve with one from her lower chamber they then replace the valve in her lower chamber with another one (this is where I get confused if it's lab grown or a pig valve or the bad valve from her upper chamber not totally sure). Her surgery had a few complications and she was in a medical induced coma for 11 days. She had excessive fluid build up around her lungs and heart plus one of the risks we knew about before the surgery was that doing this relatively new surgery was that there is a nerve in her heart that they didn't know how to avoid completely so there was a chance that if they cut it she would need a pace maker for the rest of her life. We are still not sure if they did or did not hit that nerve. I'll explain later in the post. She was also having issues with contaminates in her blood from the anesthesia and meds they gave her during surgery.

Moving forward after 47 days in the hospital she was good to come home no pace maker and a slight change in her meds but nothing crazy.

I'm not certain about the exact timing but approximately 4 to 6 months later she was admitted to the hospital for chest pains. The doctors had her hooked up to a EKG and she flatlined for 2 minutes 45 seconds before they got her defibrillated. They got her a temporary pacemaker and did a full heart echo and found she needed stints where they reattached her arteries due to being pinched slightly from reattachment. Her doctor also ended up finding that she needed a permanent pace maker but not a full time pacing one. She was having AFib events 4 to 5 times a day approximately 5 to 90 minutes long. This was also causing her to build up fluid in her chest around her heart and lungs and in her legs. On top of that in the next 2 or 3 months they did a full hysterectomy because they thought her hormones were affecting her heart and she was having issues with being on blood thinners and having monthly bleeding that now lasted 2 weeks sometimes longer. It helped but caused other issues with hormone replacement and she was put on mood stabilizer and antidepressants because of her PTSD and anxiety from all the hospital stays and surgeries. (Almost all these meds have weight gain side affects.)

(TLDR people start here)

Fast forward to 2025 (2 years 1 month from heart surgery) and currently she is still having AFib events, still building fluid in her chest and legs, we have to take her to the hospital for IV lasiks every 2 months, We are waiting to get an svt and another ablation (forgot the name) that is supposed to help stop the AFib events, she can't walk more than about 100 feet without having to stop for a few minutes, she has no energy to do anything, she has trouble taking showers and has to use a shower chair, she has gained 120 pounds because of the meds (yes she is on a VERY strict diet), she has PTSD and anxiety from surgery, and we have not been intimate since her heart surgery.

Her doctor hasn't said to much on how to deal with this and get back to a normal life. They did get her in cardiac physical therapy but insurance would only cover 15 30minute sessions she used up right after her heart surgery.

So my question and what I need help with is what can I do to help her recovery? Is it bad to push your self with these heart conditions? In my opinion I think she should be trying to rebuild stamina and exercise even if it is super slow and low intensity. Is that wrong to think that? Is it normal for your energy level to drop to almost nothing after heart surgery? I understand she went through a lot and the things her body had to go through to recover after all the surgeries and complications but does it really take 2 years and some change to recover? Even a little bit? Will she start to regain energy and stamina with out forceing herself to pust past that initial tired point? Just as an example she has problems walking any kind of distance but should she be going as far as she can and then pushing it another few steps? Is she playing me when she tells me she can't do simple things like cleaning dishes after a meal? Am I in the wrong for thinking she she is over exaggerating what she can't do?

I know I will never understand what she went through fully but I am here to support her on her journey and assist in any way I can. I am trying to better understand the difficulties of heart surgery.

Thanks for reading if you made it this far!