Pulmonary Hypertension, HHT & New Year's Resolutions

Pulmonary Hypertension, HHT & New Year’s Resolutions

You may remember my daughter, Riley. I wrote about her a couple of years ago in a previous blog post. She was diagnosed with pulmonary hypertension when she was four years old. At that time, she had to wear a backpack that delivered intravenous medications 24-hours a day to help keep her heart pressures stable.  A lot has happened since then, and because of that, our family has decided to make a New Year’s resolution.

Why We’re Making A New Year’s Resolution

You see, we’ve seen a lot of our friends with pulmonary hypertension pass away this year. One of Riley’s doctors also mentioned that a lung transplant is likely to be in her future. Those two things have rocked us. They’ve changed our overall perspective. So we’ve resolved to live in the moment and make as many memories as possible in 2020.

What’s Happened the Last Two Years

Over the last two years, we’ve had some ups and downs. On the one hand, Riley was excited to be able to lose the backpack that was pumping medication intravenously. She is now able to take her medications orally. This has given her so much more freedom. Freedom to move, to swim more easily, and to feel like any other nine-year-old kid.

On the other hand, she received a new diagnosis which gave us another thing to worry about. When Riley was first diagnosed with pulmonary hypertension, we agreed to donate her blood to research. Eventually they did some genetic testing and discovered that she has hereditary hemorrhagic telangiectasia (HHT). This disorder can cause problems for the blood vessels, including the development of arteriovenous malformations (AVMs). AVMs happen when a group of blood vessels tangle in the body, interrupting normal blood flow and the circulation of oxygen.

Hereditary Hemorrhagic Telangiectasia Caused Her Pulmonary Hypertension

Pulmonary hypertension can be a complicating presentation of HHT and that is why she has begun seeing Dr. Hammill in the Hemangioma and Vascular Malformation Center to keep an eye on her lung AVMs. During Riley’s yearly heart catheterizations, her cardiologist, Dr. Hirsch, also examines the AVMs. They’re not to the point yet where they’re causing problems, but if they do enlarge they may need to be embolized. And even further down the road, if they multiply, she may need a lung transplant.

This new information rocked our world. Right now we’re simply keeping an eye on things. But we’ve realized that we need to live in the moment. Make new memories. Riley has always had big ideas and wants to see the world. So we’re going to help her accomplish that while we can.

New Year’s Resolution: To Travel and Make More Memories

Riley wants to see all of the Disney locations. She first visited Disney World in Orlando back in 2015. It brought her joy during a difficult time. Her health wasn’t so great. She was on a subcutaneous pump and we had to change it often. It was painful. So like many, she equates Disney World with happiness. We’ve made travel arrangements to visit Disneyland in Anaheim, California, this coming summer. She’s so unbelievably excited.

In addition to Disneyland, her travel list includes New York, London, and Tokyo. Naturally, she wants to see the other Disney locations around the world. We’ll have to save up and those international locations may have to be aspirational, but we do hope to visit them all one day. We’ve resolved to live in the moment and make as many memories as possible, because life is too short to put things off. We’re not going to allow her diagnoses to be in control. No diagnosis, treatment, or impending transplant are more powerful than the memories we will make.  

To learn more about our Pulmonary Hypertension Clinic at Cincinnati Children’s, please call 1-513-636-7072. Our Hemangioma and Vascular Formation Center can be reached at 513-636-7742.

Subscribe today for more stories, tips and updates.

Kelly Wiegele

About the Author: Kelly Wiegele

Kelly Wiegele is a wife and proud mother of the strongest little girl she knows. Kelly was born and raised in Lexington, KY. She works as a contractor to support the military.  She tries to be very active in the Pulmonary Hypertension world and is a part of a caregiver group through PHA. Kelly also loves to advocate for pulmonary hypertension and help other parents in any way she can. In the spare time she has, she enjoys crafting.

Write a comment

Comments

  1. Katie January 23, 05:27
    I've been diagnosed with PH for almost a year after having my son. This is comes from my Gene's. The hazzle of changing my pump and taking care of two boys plus working 40hrs is hard. Hats off to your daughter for handling this at such a young age. I am trying to do the same thing of traveling as much as I can with my boys before I get to bad of shape.