I saw the pulmonologist and ended up getting a right heart cath too, and everything came back normal. The 6 min walk test, right heart cath, VQ Scan and PFT. The only abnormality was the echo as always which they considered actually only Moderate instead of Bordering Severe. In the end, I don’t have lung problems at all. We tested for sleep apnea and that was negative, and we tested for Lupus.
My ANA lupus test was negative when I was at my PCP, but with the pulmonologist test, it was positive. Other testing for Lupus and autoimmune diseases such as vasculitis, scleraderma, etc all came back negative, so it may just be a false positive. Other than that, I didn’t learn anything new.
2 weeks ago, I came down with pericarditis again. At this point, I know when I’m going to get it before it happens. When I lay down, the left side of my throat has a weird sensation, and then 2 days after, my chest will suddenly be in excruciating pain and it radiates to my shoulders, in between my scapulas and up to my neck. Hopefully I can start the medication now right when I get that throat feeling and I can avoid the ER again.
The pericarditis went on for a week and a half, and it just so happened to be the week I started my new job! Just great! I did work while I had pericarditis and I feel like maybe that is why it took so long to heal. My WBC was high again and I’m just hoping this is just normal pericarditis and not because of an autoimmune condition.
I had an echo last Thursday and followed it up with electrophysiologist since I already had the appointment scheduled. My holter monitor showed that I no longer has Inappropriate Sinus Tachycardia, and I was told the beautiful news that if it did come back, the medication Ivabradine is available in the US now!
But the good news stopped there. My tricuspid valve is worse, regurgitation is past severe now, the right atrium is moderately dilated, right ventricle is mildly dilated and now my mitral valve is showing regurgitation. He told me I’ll need to have open heart surgery
Being told you’ll need open heart surgery is really hard, and I’m surprised I didn’t cry right there in the office. I was very shocked.
I have an appointment with an adult congenital heart specialist who was suppose to keep trying to find the cause of my valve disease or officially diagnose it as primary tricuspid valve disease, but now it is looking like she will help me with where to go for heart surgery.
It isn’t something I can avoid. I’m frustrated, I’m 22, it’s not fair.
I also have to come to the realization that I may not be able to have kids.
I know for a fact I can’t have kids right now with the heart valve being severe, but it is looking like the chances are very slim even after heart surgery because of the medication you have to take afterwards.
It’s like I was being told I had cancer, and I don’t want to downplay cancer because that is just as hard and worse that what I’m going through, but I feel like it would have been easier to cope with. I’m getting surgery and we still have no idea where we are heading or why this happened and how we let it get this far. With cancer, they at least have an answer and a treatment plan. At this point, we are just winging it still, marking out more and more things it’s not.
I cry every hour now it seems, it’s very hard to take in.