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Amanda Howard phaware® interview 369

Apr 5, 2022

Pulmonary hypertension caregiver, Amanda Howard, discusses her 17-year-old daughter Abby's lifelong battle with PH after being diagnosed in the PICU at 8 months old.

Amanda Howard:
My name's Amanda Howard. I'm connected to PH through my 17-year-old daughter, Abby. Abby was diagnosed with PH when she was eight months old. We thought she had outgrown it when she was almost six and then a routine echo on August 31, 2017 showed that it was back. That brought us back to being connected with PH again. I currently live in Perry, Iowa with my husband, Chris. We have two other children named Grace. Grace turns 14 on the 20th of this month. And then Blake is eight.

When she was eight months old, we almost lost her, but it was found that she had PH in the ICU. We thought it went away because she was supposed to go to Texas to get a double heart and lung transplant shortly before she turned two. At the time, her cardiologist said, let's wait. So we waited. Fast forward to when she was almost six. In August of 2010, she had an echo and her cardiologist thought she had outgrown it. So she wasn't taking any more meds or anything.

Unbeknownst to us, she had been having chest pain with exertion and stuff, but she didn't tell us because she thought it was just normal. Then in July of 2017, her cardiologist happened to call us in and said, "Hey, let's bring Abby in for a routine echo because we haven't seen her in a while.” That's when we found out it was back.

It was hard. She actually ended up in the PICU before she was eight months old. I had been taking her to my primary doctor, her pediatrician at the time, saying something's wrong. She stopped eating. She stopped drinking. She would cry all the time and he would tell me, oh, I was just being a worrywart.

Well, my mom is a nurse and I made the comment to my mom. I said, "Mom, something's still going on with Abby. I'm going to take her to my pediatrician and demand that he admit her." She made a comment to me. She's like, "Do you want me to go with you?", I'm like, "No, I got this."

So I went to my pediatrician and I demanded he admit her and he said, "Let's do this. Let's have you take her home and push fluids and if she's still not eating or drinking by 5:00, I'll admit her to the local hospital." I said, "Okay." So 5:00 rolled around. I had been trying to get her to eat and drink all day. She still wouldn't eat or drink. So he admitted her. It was around 8:00 the next morning, I made the comment to the nurse. I said, "Hey, I'm going to go home and get some breakfast because I'm hungry," because I was a single mom at that time.

I ran home to get breakfast because I only lived a couple miles from the house. As soon as I walked in the door, my phone started ringing and it was her pediatrician. I remember thinking, "Well, this is odd." So I answered the phone and he says, "Hey, Amanda, this is Dr. Jones. Can you sit down?" I'm like, "Well, why do you want me to sit down?" He's like, "I just need you to sit down." Abby's lungs were full of fluid. I remember him telling me that she's going to be going by ambulance up to Omaha Children's Hospital. I need you to get back here as soon as you can. I did.

It's kind of a blur after that, but once we got to Omaha Children's Hospital, I remember the pulmonologist, which we grew to love, ordered a CAT scan of her lungs. She came back upstairs after that. At that time I didn't understand what retracting was. I remember making the comment to my mom. I said, "Mom, Abby's stomach's doing something weird." So my mom asked me to hand her Abby and I did. The next thing out of my mom's mouth is "Amanda, go get the nurse." When I got the nurse, the nurse came in, took one look at Abby and called for a rapid response team. Shortly after that is when we started the quest to pulmonary hypertension diagnosis and everything.

I was going to college. I gave up college to stay home with her. I lived with my mom. Abby was on 24/7 oxygen at that time. She was on a feeding tube. She wasn't allowed to have anything by mouth. She was on an assortment of medications. It was closer to when I met my husband. He helped me with Abby. We moved in together. He helped me with Abby's oxygen, her feeding tubes, her medications. That went on for a few years, just routinely. Then in August of 2010, that's when the doctor told us she had outgrown her PH. We thought, great, this is good news. She didn't have to wear oxygen anymore. She wasn't on a feeding tube anymore. She was able to eat my mouth. She got the feeding tube removed. She was off all the medications. It was amazing.

Looking back, I wish I would have done things differently. I wish we would have went by the echo. I wish we would've been like, "Hey, no, this is good news, but let's just do a heart catheterization to make sure," because Abby since sustained some lung damage as a result of it being untreated for those years, but hindsight's always 20/20. At the time we thought it was great news.

She's doing pretty good right now. She doesn't have to wear oxygen anymore. She takes meds obviously. Her last echo looked good. They said she was still stable. She has a heart catheterization coming up. She has a CT scan coming up, but they said that's just preliminary or whatever to make sure she's okay, because she hasn't had those in a while. Overall, she's doing amazing now. She still gets short of breath, but she has a few limitations because of the lung damage she suffered. But compared to overall, she's doing good compared to what could be. Because of how bad her lungs look, her pulmonologist said she could be doing worse since she is, but she's adapted and she's found a way to work around it.

I'll be honest. I trust him. They've been Abby's care team since she was little. We have a new pulmonologist that's been taking care of Abby and he's great. Her cardiologist has been in the picture since she was little, and they've been great. I was a little upset with them at first, because I felt like they dropped the ball, but I'm past that now. Now that I realize things can happen and people make mistakes, we have a great relationship. I trust them. Abby can ask them anything. I can ask them anything. They will go to bat for Abby. So it's a good relationship now.

Abby's doing great. She's been through elementary. She's been through middle school and she is a junior in high school now. She's been dealing with this since she was little and she knows how to handle it. Her teachers have been great in helping her when she needs help. She knows to let them know if she's having problems.

It gives me a lot of faith that I know she'll take care of herself when she is off on her own, because she is 17 now. She's going to be a senior next year. I know that she knows how to listen to her body and she knows when, to say "Hey, I need a break." It gives me faith and hope that I don't have to be there to make sure she's taking care of herself, because she knows how to take care of herself, herself. Abby's 17, and her team told us that she won't live past the age of six. So it's just amazing to see how far she's come and everything.

If I had to offer any advice for any caregivers or parents out there, take one day at a time. Sometimes, maybe one step at a time. I know in the beginning, I was taking one breath at a time thinking, "I can do this. I can do this for my child". You can too. Don't be scared to ask for help if you need it. Don't be scared to go to a counselor. Don't be scared to take depression meds. They help. I'm glad I do it. It's made me a better mom because of it.

Things will seem hard. They were hard for me in the beginning. I remember how hard it was sitting in that cold PICU room when Abby was eight months old and thinking, "This can't possibly be what is going to happen to my child." I remember sitting in the one room again after Abby was diagnosed again, thinking, "No, we cannot go down this journey again," but now that we've done it, there is hope.

There are amazing support people out there. Amazing people that have been right where you're at. We are willing to help and lend a hand. Your medical team is there. Just reach out. I have found that talking to my counselor helps me give some of the stuff that I'm having a hard time with off my shoulders. I live in the present. Down the road, can something happen? Yeah. But right now I live in the present. Don't be scared to get a counselor. Don't be scared to take depression meds if you need them to help you function. There's nothing wrong with that.

My name's Amanda Howard and I'm aware that my daughter, Abby, is rare.

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