This week, I met with a new cardiologist at Baylor. I love the whole Baylor setup so much better than where I was before. It was really nice. Clean, beautiful, gorgeous offices with comfortable multiple sized chairs. The offices are nice and well kept. The tables are comfortable. The computers and equipment are new and up-to-date modern technology-wise.

The most important part was the doctor, though. He’s a heart surgeon, a cardiologist, specialist in his field. I’ve grown accustomed to them really being jerks, but he wasn’t. Then today, I met an associate in his clinic, another cadiologist, who was super kind as well. They both listened to me. What I had to say mattered. They both complimented me on being an informed patient (where the doctors at UTMB always made me feel bad about being well-informed, like it was an affront to them or something). I feel like this is easily my new medical home. It sucks that it’s an hour’s drive away, but for quality and comfortable care, you take what you can get.

So after meeting with him, he heard a murmur and ordered a snap-shot EKG. I showed an ST abnormality and inverted T waves anteriorly. He said I had tricuspid regurgitation. He also said that whatever it was on the EKG usually only happened with aortic stenosis. He wanted my records right then and he wanted me to do an echocardiogram as soon as possible. They even wanted me to do it that day, but I didn’t have enough oxygen with me to stay for several more hours. We rescheduled it for today.

So today, I came in, they were ready for me. I ended up getting three completely echocardiograms. First, the medical tech did one. The doctor wanted something else done, so a second, more experienced technician came in and did a second one, and they did a saline push to determine my pulmonary pressure to determine if they could do one with contrast or not. (something about the contrast being contraindicated in people with pulmonary hypertension). The doctor okayed doing the contrast, even though I was showing moderate to severe pressures, because he really wanted to get some really clear images.

So… the bad news.

First, my pulmonary pressures were higher than I had hoped. They were estimated on echo ‘splash’ at about 43-45mmHg. That’s better when first diagnosed, which was 55-60mmHg, but it’s still a lot higher than they should be, and a lot higher than I had expected my resting pressure to be. So that’s not good.

Secondly, I have moderate aortic valve stenosis (symptomatic) with congestive heart failure of both the right and left heart. The left heart is left ventricular diastolic failure with preserved ejection fraction. The right heart is right aortic thickening and enlargement with tricuspid regurgitation causing congestion.

Surprisingly, my heart is still really strong considering all that. My ejection fraction stays mostly preserved and as good as anyone without heart damage has. I think it’s because my heart wasn’t damaged due to lifestyle/dietary/hereditary issues but rather it was damaged due to the PEs going through it, so the heart is stronger than most people’s when they have the issues I have. But when you throw in the adrenal insufficiency, the autoimmune thyroiditis and hypothyroidism, the fluid overload that is persisting, and the unspecified autoimmune condition that they treat for but still haven’t figured out what to call it–I don’t qualify for PTE surgery–which is, for those who don’t know, the one they call the ‘cure’ for CTEPH.

Reading about symptomatic aortic stenosis is super scary. What it basically means is that within two years, I will likely have to have the aortic valve replaced. That could potentially be a really big scary surgery–which, with the PH, I wouldn’t really qualify for–but there is a new procedure that is a lot less invasive which I might qualify for, that would be similar to the right-heart cath and balloon valvuloplasty, where I won’t have to be cut open, but just a tiny knick in the neck or groin area. Recovery time would be much faster and easier too.

I think the doc was already thinking about that, because he was asking me if I could be sedated–not a normal question docs usually ask at an initial office visit. He was also asking if I could lie flat on my back and still breathe (some PH patients can’t–I still can if I lie down slowly and am not short of breath before I lie down.)

So I don’t know what it all means yet. I’m not processing it all yet. I’m still reading. Survival rate without aortic valve replacement is 50% at 2 years and 10% at five years. That means 90% of people who don’t get the valve replaced… die. So yeah, replacement isn’t even an option. It’s just a matter of how to do this safely as possible.

So, there you have it. Have a broken heart, but not for any of the typical reasons most people have broken hearts, literally figuratively.

I’ll know more next week after the cardiologists have time to review the echo and the pulmos have time to review 600 pages of my history. Until then, I’m in that numb ‘research and read but don’t panic’ mode I’m always in after getting ‘news’.

I love and need you all.

Love and stuff,

Michy