News : A year with PH: Trudy Seidel recalls a journey that began on Easter 2012

Trudy's Seidel's daily medication for her IV and heart catheter.

Trudy shared this photo to show how difficult the treatment for PH can be.

Before PH: Trudy Seidel before her diagnosis of the rare lung disease.

This Easter was a sad and difficult milestone for Trudy Seidel, as she realized she has been dealing with her PH diagnosis for a year already.

“I've cried a lot today," Trudy said last week as she prepared for Easter with her family. “I don't know if it’s the memories coming back because of my first year anniversary of my PH diagnosis. I think maybe it’s that I really haven't been back to my normal mentally since my medicine was changed to Remodulin. It’s odd.”

Trudy, who said this week she feels like she is making a comeback, with less pain and fewer tears, clearly remembers how she realized last Easter that something was terribly wrong with her body.

“I had no energy to even hide eggs for my daughter Jolie. Her sister Jacey did it for me and she also helped her find them – I just watched,” Trudy recalls. “Then after Easter dinner at my sister’s house, I sat there and didn't even try to help clean up. I knew something was wrong with me and I didn't think I was going to make it another year. I can only imagine what my family thought as they were putting things away, taking care of Jolie. I just sat at the end of the table telling myself I need to get up. But, I couldn't. Nobody really knows how hard I tried that day – I really did.”

Soon Trudy went to the doctor, and ended up in the care of the staff at University of Iowa Hospitals, where she was diagnosed with the rare lung disease known as PH – Pulmonary Hypertension.

Trudy’s nurse, Traci Stewart at the UIHC PH Clinic, said it’s not that odd for people with PH to experience the extremely sad feelings Trudy described because of how the disease – still with no known cause – affects the ability of patients to breathe or do daily activities, leaving them depending on others for everyday living essentials.

“PH is a rare disease that causes difficulty breathing especially with activity. Other symptoms can include fainting or dizzy spells, chest pain, fatigue and swelling in the legs and belly. PH is caused by high pressures in the vessels of the lungs. The high pressures make it difficult for the right side of the heart to pump blood into the lungs to get oxygen into the blood,” explains Stewart.

“Support is essential to patients with PH,” says the nurse. “PH can limit people’s daily activities due to symptoms. The PH medications can be complex and patients often use supplemental oxygen.”

Another factor in Trudy’s case, says Stewart, is the fact that she her symptoms were “very advanced” by the time she began treatment.

“Community awareness is very much needed to help others get diagnosed earlier,” says Stewart. Trudy is a great example of this need.”

Invisible illness

“Our lungs are diseased and our hearts are broken, but people can’t see that,” says Trudy. “It’s hard to be ‘sick’ with a disease when many of us ‘PHers’ don't look ‘sick.’

“It’s been a long and lonely year," says Trudy. "I think I really hadn't accepted PH like I thought I had until this January. I had befriended a lady in one of my PH groups on Facebook in December; in the middle of January, she passed away from complications of PH. You know they say it’s not curable, and you think you have accepted it, until someone dies of the very same disease you living with – and then it all seemed so much more real.”

May 4 fund-raiser planning

Within five days of her friend’s death, Trudy had begun researching what kind of fund-raiser she should do and what she could actually participate in.

“I had bracelets designed and ordered, I had T-shirts made, I placed information on Facebook and it sky-rocketed.” Trudy says. “I’m so nervous and it’s hard to talk about my disease, as it’s much easier to crawl in a corner and pretend this isn't happening. But I don't want to die and leave my children and my family, so I’m fighting with everything I have and I will continue to fight as long as I can or until they can cure this disease that I didn't even know existed a year ago.”

See the event Facebook page HERE.

Silent disease

“This is why it’s so important to me,” says Trudy. “I need everyone to know – they have to know – because as long as it remains a silent disease it can’t be cured.”

For this mother of four, the PH diagnosis was by no means her first crisis of recent years.

“We had moved around Iowa for a few years, and then decided to come back in time to have the home we rented for 13 days get flooded in 2008,” Trudy recalls. “Then we found another house and the roof was torn off during the straight-line winds in July 2011, so I wasn't sure Vinton wanted me and my family back. But praise the Lord, this town – my hometown – has rallied around me and there is no other place like home. I wouldn't want to be anywhere else but home having to fight this deadly disease.”

Even though she is still not comfortable discussing her condition, her desire to help others know about and fight this disease compels Trudy to share things she would otherwise keep to herself, including photos of her treatment. Photos of her daily medical supplies, as well as the IV lines connected to the heart catheter and pump help those unfamiliar with PH understand the difficulties of treating it.

Trudy has also created a video she calls “The PHaces of PH.” A Facebook group also allows Trudy and other PH patients to share their experiences and help each other find resources.

“Most of the faces in that video are people who share our Facebook group we use daily for supporting each other. I made the video so people could see us and give others a glimpse of what we endure on a daily basis and how our lives are affected, even though we don’t all look sick,” she said.

Treatment options

Several conditions can cause PH, and several treatment options are available, says Stewart.

“For some types of PH the best treatment is treatment of the underlying condition and for other types of PH there are specialized treatments to improve symptoms. The specialized treatments range from a pill to inhaled medication to a continuous infusion under the skin or through catheter into the vein,” she says. “There is no cure for pulmonary hypertension; therefore an early and accurate diagnosis is critical for survival.”

Networking with other patients, says Stewart, helps people learn to manage symptoms and medication side effects. Learning how to explain this rare disease can be difficult because of its complexity to diagnose and treat. Knowing that there are others to talk to through a support group or though the online community such as the Pulmonary Hypertension Association (PHA) provides comfort and helps people cope. The PHA is dedicated to finding ways to prevent and cure PH and to provide hope for the PH community through support, research, education, advocacy and awareness. Find out more at http://www.phassociation.org/