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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday!

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Lisa Knight Skeeters - phaware® interview 339

Aug 25, 2020

Lisa Knight Skeeters was born with heart defects and had multiple surgeries through her younger years. 14 years ago, she developed pulmonary hypertension and was advised not to have children. In this episode, Lisa discusses the reasons she and her husband decided to adopt.

My name is Lisa Skeeters, and I was born with a heart defect called Tetralogy of Fallot, which is basically four major defects in the heart. I had surgery when I was 11, and then again at 19. I did considerably well over the years. I went on to college, started teaching school, and got married. Then, I started noticing that I was getting really short of breath, more so than usual. Just fatigued. 14 years ago, I was diagnosed with pulmonary hypertension. I had been not struggling with that, but living with it for the last 14 years, doing really well.

I was told that because of my heart condition and because of the pulmonary hypertension, it would be best not to have children. So adoption was a very easy choice for us. We kind of dabbled in surrogacy a little bit, but then decided against that, because we knew there were already so many children that needed to be placed. We decided adoption was the choice for us.

I was born in the early sixties, 1963, when open heart surgery wasn't being done all the time like it's done now. Not making light of it now, but it just was still kind of in the pioneering days of heart surgery. So the doctors just said, “let's wait until she has to have it.”

My mother actually found an article, of all places, in The National Inquirer about a doctor that was doing the type of surgery I needed in Birmingham, Alabama. She contacted him and had all my records sent from the hospital that I'd been seeing here in Georgia, and the doctor said, “yes, we can take care of her.” So at age 11, like I said earlier, I went and had surgery.

I was a tiny little girl. I just wouldn't grow. Immediately after surgery, I just began to do really well. Then eight years later, when I was a sophomore in college, I started having heart failure. I had to have the valve replaced that they put in during the first surgery. I just have done remarkably well with my heart situation since then.

I was 19 when I had my second heart surgery, and I think I was 43 when I was diagnosed with pulmonary hypertension. I did really well. I got married when I was 32. My husband and I both were 32. I just started noticing that I was starting to struggle. That's when I went to the cardiologist, and he said, “well, let's lose some weight.” I said, “okay, I can do that.” I went home and lost some weight and I still was struggling. I finally just told him, it's not that. I'm not a big person. It's something else.

He sent me to another cardiologist at another hospital and she did a right heart catheterization, and that's when it was discovered. I'm on a medication called Remodulin, and it's IV. I have a Hickman catheter in my chest and I have a pump that I wear around my waist and it shoots in the medication that I need. I'm on a handful of other pills, but the Remodulin really has been the game changer for me. It's just really given me back my life. Rarely do I have shortness of breath. If I walk up a flight of stairs, or if I do something a little bit more vigorously than normal, I'll have a little bit of shortness of breath, but it's really just given me my life back.

After we married, we were considering starting a family and chose not to get pregnant because of my heart condition. We adopted two boys and then I started becoming symptomatic really, really badly and was diagnosed with the PH. I wanted all the facts and I wanted to know what I would be getting into. One of the things that really made me not want to have the child myself was because there was a chance that it could be born with the same heart condition. I think it was pretty minimal, but it still made me think I don't want to have a child with a heart condition when I could adopt a perfectly healthy child (or as far as you know). I didn't want to put a child through that, what I had gone through.

I've thought about my own health as far as raising a child, but I have a huge support team here. My family and friends are incredible and my husband's really excellent, but often my parents helped out, especially when the boys were younger.

I think that you have to weigh all of your options and list the pros and cons. I guess I'm kind of biased toward adoption, but everybody has to make their own decision. I just think you need to weigh out every little factor that you possibly can. You'll second guess yourself a million times I'm sure, but just weighing out each option, getting as much information about your own disease as possible.

We were told when I was first diagnosed, I had two to five years without treatment. I know I was getting to the end. I was in bad shape by the time I was diagnosed. I just feel like with all the new medicines and all the treatments, and you have to also look at your own support group too, because I can't stress how important that has been in my life.

Adoption has given me a reason to keep going. It's given me the strength and the determination to take care of myself and to do well, and to make every day a better day. I know that kind of sounds corny. Even though my children are 21 and 19 now, I feel like I play about a role in their lives, and I want to continue that. It's really just given me the determination to take care of myself, and to beat this disease. I want to see grandchildren.

My name is Lisa Skeeters, and I'm aware that I'm rare.

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