Indianapolis, Ind. (April 10, 2018) — Donna Sparks combats a progressive life-threatening lung disease with courage, conviction and compassion — for herself and others who share her fight. Diagnosed three years ago with pulmonary hypertension (PH), Donna is an active participant in myPHA, the Pulmonary Hypertension Association (PHA)’s online support community for individuals and families affected by the disease.
“PHA’s online community has been a significant source of assistance throughout this journey, offering me listening tempered with an authentic understanding, thoughtful support, and meaningful friendships, for which I am grateful,” she said.
Donna takes health seriously, enough that she earned a Doctor of Nursing Practice (DNP) degree. So, three years ago when she and her daughter were walking her dog and she found herself struggling to breathe, she didn’t take it lightly. A recent widow who had taken over her late husband’s household chores, Donna was busier than usual. But she expected the extra work would make her stronger, not weaker. A few weeks later, she noticed almost any activity made her short of breath and sometimes dizzy.
“One weekend, as I scrubbed the fountain on the pool, I had such a severe episode of dizziness that I became unable to see. I had to sit down and wait for it to pass. That was when I knew something was wrong,” she said.
Donna did not hesitate to see her doctor, who told her she had a mild case of asthma but said that did not explain all her symptoms. She immediately referred Donna to a pulmonologist who ordered a pulmonary function test, CT of the lungs and an echocardiogram.
“Almost immediately after I left the pulmonologist’s office, I became terribly short of breath and dizzy. My chest hurt with exertion, and I had the feeling that something was ominously wrong,” Donna said. That evening the doctor called and said she wanted to see me the very next day, instead of waiting for my appointment the following month.”
“That morning the pulmonologist came into the treatment room and said, Mrs. Sparks, you have PH. We need to find out why, what is causing it, and get treatment started. I’m sending you to a PH specialist, and I want to walk test you right now.”
PH is a complex illness that affects adults and children of all ages and ethnic backgrounds. It results in the arteries in the lungs becoming damaged, narrowed or stiffened. PH forces the right side of the heart to pump extra hard to push blood through to the lungs, which can lead to right heart failure and death. Symptoms of PH are non-specific and include shortness of breath, fatigue and chest pain. Consequently, people with PH can go months, sometimes years, believing they have less threatening illnesses, such as asthma.
“The walk test became so complicated that it was almost comical. I started walking with a pulse oximeter on and the reading was in the mid-80s. I became dizzy, so the staff sat me down. The doctor noticed all of that and then did what doctors do. She started barking orders. By that evening I was using oxygen at home. It was the first thing that helped me,” she said.
Donna saw a PH specialist the next day and within days, she underwent a right heart catheterization, V/Q scan and lab work. Unlike many people who receive many misdiagnoses before learning they have PH, Donna’s first diagnosis was the correct one. The specialist’s exact words are ones that have remained indelible in her memory.
‘Mrs. Sparks, you have chronic thromboembolic pulmonary hypertension (CTEPH), and you need surgery; it is potentially curable.’”
CTEPH happens when old blood clots in the lungs restrict blood flow and increase pressure in the arteries of the lungs. CTEPH is one of two forms of PH that can be treated by FDA-approved treatments. But unlike people with other forms of PH, which are incurable, CTEPH patients may also be eligible for a procedure called Pulmonary Thromboendarterectomy (PTE). PTE can remove some of the old clots, lighten the burden on the right side of the heart, and in many cases, normalize the lung pressures.
“I was referred to a hospital in another state for PTE surgery, where I learned that I was not a surgical candidate due to distal lesions,” Donna said. “But while there, I learned of a new procedure called balloon pulmonary angioplasty (BPA). BPA was first developed in Japan and is a relatively new procedure in the United States. Essentially, the patient is taken into the catheterization lab and, in a procedure very similar to a right heart catheterization, physicians use a balloon-tipped catheter to open closed or narrowed pulmonary vessels.”
Donna underwent five BPA sessions and said the process was not easy. For example, 48 hours after her first session, she said she collapsed at a movie theater and required resuscitation and admission to the hospital for profoundly low blood pressure. Still he has no regrets about having the procedures.
“I am glad I had the courage to have the BPA because I’m better off than I was, but I still have improvements to make.”
Donna said BPA has helped improve her pulmonary pressures. She said she is still healing and recovering at home. “Currently, I’m taking Adempas and use supplemental oxygen and I’m grateful for the friends I’ve met along the way through the PHA,” she said.
Donna said her way of life has dramatically changed. She no longer works, but she has discovered through her participation in myPHA that her nursing education comes in handy along with the empathy that naturally comes from having shared experiences with others who are living with PH.
“My new path brings new lessons that I would have never known. This disabling disease robs confidence, the ability to express needs, and impacts the individual physically, emotionally, mentally and spiritually,” she said. “The individual who is brave enough to join a patient on this journey is a brave person indeed.”
Donna hopes her story helps raise awareness of PH in general as well as CTEPH and encourages participation in regional PHA fundraising events. She is asking her friends and family in the Chicago area to participate in PHA’s annual O2 breathe Stride for a Cure, which takes place May 5 this year. The event supports those affected by PH by supporting PHA’s programs for families, health care professionals and researchers. To participate or donate, click here.