Life with a rare disease can be difficult and scary, especially when you can’t be sure what the future holds. Jessica Calkins, a 37-year-old mother from Washington, understands this experience firsthand. She lives with pulmonary arterial hypertension (PAH) and is awaiting a heart and double lung transplant. Her journey has been long, and she’s had to endure losing her independence and the ability to perform the tasks she used to.
Jessica is a stay-at-home mom, spending her time with her boyfriend, their eight kids, and their dog. Since her diagnosis of PAH and right heart failure in 2018, she’s seen her life change right before her eyes. The diagnosis in and of itself was terrifying, and she was also afraid that she wouldn’t get the chance to see her kids grow up and be there for them.
Since the diagnosis, Jessica has dealt with a loss of independence and the ability to do tasks she used to complete with ease. She handles fatigue, mobility issues, and can’t do the things that she used to like errands or running around with her kids. Additionally, she’s hooked up to an oxygen tank due to unsteady oxygen levels and constantly receives medication through a port in her chest.
Now, she’s awaiting her transplants and putting in the work to get on the transplant list. Despite her mobility issues and other symptoms, she has lost 63 pounds to achieve transplant eligibility. She’s fighting hard for more time with her family and another chance at life.
Until it’s time for her transplant, Jessica has been finding support in a number of PH groups, where she’s an active member. She’s also maintaining a positive attitude and feeling the love from those around her, which gives her strength.
PAH is a progressive form of high blood pressure that is characterized by the thickening of the pulmonary arteries. These arteries become blocked, which forces the heart to work harder to push blood through, which then leaves less oxygen-rich blood for the rest of the body. Additionally, the heart gets weaker as it has to work harder and harder to do its job. These issues lead to symptoms such as chest pain, fatigue, fainting, dizziness, shortness of breath, and swelling in the legs and ankles.
A mutated BMPR2 gene can cause this condition, although the use of street drugs or other diseases can also result in PAH. If the cause is genetic, the mutation is passed down in an autosomal dominant pattern. In terms of treatment, there is no cure; it focuses on slowing progression and addressing symptoms. Options include vasodilators, guanylate cyclase stimulators, sildenafil, endothelin receptor agonists, tadalafil, warfarin, high-dose calcium channel blockers, diuretics, oxygen therapy, digoxin, atrial septostomy, and a lung or heart transplant.
Read more about Jessica’s story here.