My OHSU heart story - by Heidi

Heidi in the SerengetiWhen I was born, I had pulmonary atresia with a hypoplastic right ventricle. That means I didn’t have a functioning pulmonary valve, so I couldn’t get enough oxygen, and the right side of my heart was underdeveloped. I was rushed by ambulance from the hospital in Eugene to OHSU, where Dr. Albert Starr performed open heart surgery on me: a surgical pulmonary valvotomy to open a valve. Then when I was three, I had a transannular patch placed to help the blood flow better to my heart. They said someday I’d have to have my pulmonary valve replaced.

That “someday” continued for a long time: three decades.

I went to OHSU regularly until I turned 18. But when you leave home, you move around a lot, and I didn’t have a regular cardiologist for a while. Then living abroad became more of a permanent kind of thing, so when I’d come home I’d keep OHSU as my medical home base. I went about once a year, seeing Dr.  Victor Menashe for most of my life, and later either Dr.  Luke Burchill or Dr. Abigail Khan.

About a year ago I started to feel out of breath when going up stairs, my ankles and feet were swelling, and I felt more frequent heart palpitations. I’ve lived overseas in Jordan as a teacher for the past three years but visit Oregon frequently, so last summer I went to OHSU, where they did an echocardiogram  and MRI. The tests showed my pulmonary valve leak was worsening and my right ventricle was beginning to dilate. I had to return to Jordan, but stayed in touch with OHSU through MyChart, and after some follow-up in Jordan, we decided I would have surgery when I was back in Oregon over the winter.

In early January, I had my pulmonary valve replaced at OHSU. Dr. Irving Shen and Dr. Ashok Muralidaran were my surgeons. They were really nice and willing to explain everything in detail and answer all my family’s questions. It was an open heart surgery, but there was no other way to replace the valve in my situation. This valve should last about 15-20 years. The good news is that the next time I will need to get it replaced, they’ll be able to do it via a catheter — much less invasive!

I was at OHSU about six days; I spent two nights in the ICU and then another four in the cardiac unit. Everyone was really friendly, especially the nurses. When you are first out of surgery, they make you do things you don’t necessarily want to do, like eating, sitting up, and walking down the hall. Just four doors down feels like a lot! But it’s their job to get you up and moving. Dr. Muralidaran and the adult congenital team came to visit me a few times, which was nice. Surgeons and cardiologists are busy people, so we appreciated that.

It’s been seven weeks since my surgery. I’m still a bit sore, but I’m not getting frequent palpitations or swelling anymore. I’m doing cardiac rehab right now; walking is my aerobic exercise. I’m looking forward to getting back to hiking, camping, and exploring new places. I love to travel: I’ve been to 40 countries.

One of the most important things I’ve learned is it’s so important to get follow-up on your health. Even though it’d been 30 years since my last surgery, I knew I had to stay on top of things. Even if you feel fine, the architecture of your heart can be changing.

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