Having a heart-lung condition that requires pulmonary artery reconstruction (PAR) can be overwhelming. We’re here for you throughout your care journey to answer questions and help you understand your condition and treatment process. Our families often ask us the following questions about our PAR care.
What can I expect when we come to you for care?
We are dedicated to helping your care journey go as smoothly as possible. You can expect the following steps in your or your child’s care journey:
- Often, your/your child’s referring doctor initiates an evaluation. We request past health records, imaging scans, and tests to determine if you/your child are a good candidate for our PAR program.
- We reach out to you to discuss our surgical plan and answer any questions you may have, and to schedule your/your child’s surgery. We stay in touch until your arrival.
- If you choose our care, we help you plan your stay, including lodging.
- Your/your child’s length of hospital stay depends on the type of reconstruction that is needed, but typically a stay is from two to three weeks.
- You/your child can expect a full recovery shortly after you leave our hospital. The majority of our patients experience improved circulation and an improved quality of life. In fact, many of the babies and toddlers we treat for tetralogy of Fallot with pulmonary atresia go on to live happy, normal lives.
- We keep the lines of communication open with you and your/your child’s referring doctor throughout the process and afterward during follow-up lifelong care. We check imaging scans quarterly in the first year and see you/your child at a year for cardiac catheterization to view the pulmonary arteries. We provide virtual appointments on occasion.
How do your patients benefit from PAR?
We have seen our patients experience several benefits over the years after pulmonary artery reconstruction. These benefits include:
- An improved quality of life and improved length of life due to better (often close to normal) heart-lung circulation. We have watched our patients as babies grow into healthy, happy 20-year-olds.
- The chance to live an active life. You/your child will likely be able to participate in sports, attend school, travel, work, and live a full life.
- Undergoing one surgery, rather than multiple surgeries. Because we are the No. 1 place in the country and world for PAR, our team of talented heart surgeons are highly skilled at performing highly complex surgeries (unifocalization is one of the most challenging heart-lung surgeries offered anywhere). This means that we are often able to complete several repairs in one surgery, helping you/your child avoid multiple open-heart surgeries and experience a greater chance of survival and a marked improvement in your/your child’s health.
How can I receive care from you if I live far away?
Because our program is the top in the world for pulmonary artery reconstruction, we are used to caring for people from long distances. We have a dedicated care coordinator (a doctor) and a nurse practitioner to help you with all of your needs, whether it is coordinating care with your home doctors, transferring care, helping with logistics, supporting your child’s wellness, and more. We communicate extensively with your referring doctor before and after surgery.
What resources are available for me and my family?
Our pulmonary artery reconstruction team provides a variety of resources to support you during your time with us, including:
What if my child has had heart surgery or past pulmonary artery reconstruction—can you still help?
Yes. Approximately 40% of our patients with tetralogy of Fallot have had previous heart surgery. Because of our exceptional team of heart surgeons, cardiologists, and interventional cardiologists, we are highly capable of these more complex surgeries to help improve your/your child’s heart-lung circulation.
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