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Day 3 of #30DaysofPH: Our Journey From Diagnosis to Potts Shunt Surgery
Laura Schonlau is the mother of an 18-year-old with pulmonary hypertension. Her daughter, Dakota, received her diagnosis when she was six, and her journey has had many ups and downs.
In 2018, Dakota suffered a significant decline. Her only options were a heart transplant or the experimental Potts shunt surgery. However, she was still too healthy for a transplant and qualified for the new Potts shunt procedure.
Here’s an excerpt from Laura’s story, “Even though it was extremely painful, Dakota sailed through the surgery and recovery. It took her nearly a year after the surgery to recover fully, and almost two years to see the full benefits. Now, in 2022, she is getting ready to transition to Uptravi and hopefully will be able to remove her IV line completely.”
Read the full story here.
Parents and caregivers, can you relate to Laura’s experience?
Pulmonary Hypertension News’ 30 Days of PH campaign will publish one story per day for PH Awareness Month in November. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofPH, or read the full series.
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4 Replies
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Potts Shunt is a fairly new procedure that has had success in PH patients. It’s often performed with the hope of giving a patient more time before needing a transplant.
My son had a Septostomy to hold him off until transplant, which is a procedure usually done on infants. It widens or creates a hole in the heart. This allows oxygen-rich blood to mix with oxygen-poor blood. It’s a temporary fix until surgery.
It wasn’t until after Cullen’s transplant that I started hearing about the Potts Shunt procedure and wonder if it had been available, if that is what they would have done on him instead.
For this reason for the past few years I look for someone to share their Potts Shunt experienced through “30 Days of PH”. I’m really grateful that Laura agreed to do so and I will keep her daughter in my prayers for the continued success of the procedure.
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Hi Laura, I’m so happy that Dakota qualified for the Potts shunt and that she is doing better after that recovery. I know another young woman who had PH as a child and had a Potts Shunt in St. Louis.
Wow, @colleensteele, that is an excellent question. If Cullen was
eligible for the Potts back then, it might have been an option. However, I am grateful that he did have an opportunity for a transplant since this wasn’t available back then.Thank you, Laura, for sharing this journey with us. I hope that Dakota continues to do well. I’m excited about her transition to Uptravi.
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@jenc Potts Shunt isn’t really instead of transplant, it’s to help hold off the need for one longer. But yes, I will always be grateful that Cullen was able to receive a transplant. I believe it was meant to happen for him when it did.
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Hi @colleensteele, thank you for that important point about Potts Shunts; that is usually just an option to hold off transplant. I have heard of small kids having a Potts shunt. He is now a young adult, and thankfully so far no need or talk of a transplant.
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