Patient Story 1:

Living with a Complicated Condition

For Therauplex employees David and his wife Lauren, undergoing their daughter’s complicated medical diagnosis meant facing the realities of out-of-the-box care. They have paved the way through well-connected support systems and the ability to provide care at home.

Lauren and David share how respiratory therapy is important to caring for her daughter Leila.

Q: Tell us a little bit about your family, please.

David: They have a 6-year-old son, Harrison, and her 4-year-old daughter, Leila. When Layla was 6 weeks old, she started suffering from seizures, and our family’s diagnostic journey to figure out what was going on began. Many tests, discussions, and meetings with experts. Later, Layla learned she was suffering from a rare form of hereditary epilepsy only discovered in 2017.

Q: How did your family cope with the care plan after receiving Layla’s diagnosis?

Lauren: As we learn more about Layla’s neurological condition, our conversation ranges from how to manage seizures to severe hypotension (low muscle tone), overall developmental delay, and other complications associated with neurological disease. For example, during the first winter, Leila was hospitalized whenever she caught a cold. She could not clear her airway independently, causing stress and discomfort, adding anxiety and confusion to the family’s daily routine. Afterward, I met with a pulmonologist who prescribed Layla the Best System for airway clearance.

Q: What does an airway relief system do?

David: One of the effects of low blood pressure is that decreased muscle tone affects Layla’s ability to cough. Best System Therapy helps break down and remove mucus from Layla’s airway walls. Regular respiratory therapy also helps combat mucus buildup and an environment where bacteria can grow and cause repeated lung infections.

Editor’s note:

Using High-Frequency Chest Wall Oscillation, the vest system (HFCWO). It links a vest’s air tube to an air pulse generator. The cuff rapidly inflates and deflates during treatment, applying gentle pressure to the chest wall. This allows thin mucus to loosen and move toward the larger airways, where it can be removed by coughing or sucking.

Q: How did respiratory therapy affect Layla?

Lauren: Layla personally loves wearing vests. She can’t walk, so she uses a wheelchair, sits on our lap, and jumps and giggles during treatment. It has become a bright spot in our daily family life. In a broader sense, respiratory therapy greatly changed our lives because it saved Layla from the hospital. If she gets sick with bugs, we can stay home and deal with it like a ‘typical’ kid gets a cold. You can avoid the trauma and disruption that hospitalization can bring.

Q: What’s next for your family?

Lauren: I learned a few things about Layla’s diagnosis and treatment plan, but I still have to work on my days. We cannot predict what will happen tomorrow. I look forward to starting as the world slowly opens up, as COVID has made it impossible for me to socialize with other children.

We also appreciate Leila’s growing passion for music and her improvements in speaking, particularly with her brother.

Lauren and David’s sharing of their story has our appreciation.

Patient Story 2:

Home Parenteral Nutrition: The Key to Opening a Life of Possibilities

For Trinity, a 19-year-old nutrition and food science student, parenteral nutrition at home offers the opportunity to lead a carefree life.

A growing number of people worldwide require home parenteral nutrition (PN), a form of nutrition delivered directly into the bloodstream. Total parenteral nutrition (TPN), also known as intravenous (IV) nutrition, is prescribed for many reasons, including for people with intestinal disorders such as Crohn’s disease, colitis, gastroparesis, cancer, stroke, and Parkinson’s disease. There are sick people among others. However, parenteral nutrition at home offers greater flexibility and freedom by providing the ability to control food intake outside the hospital and to continue daily activities such as work and travel.

As part of Home Parenteral Nutrition Week, held October 11-15, Trinity, her sophomore at the University of Ottawa, was asked about her journey to health, and her transition to home parenteral nutrition, and We talked about future plans. tell me about yourself

I was born and raised in Ottawa, Canada with my 5 siblings, and am bilingual in English and French. Growing up, I was a competitive athlete competing in flying, gliding, and shooting through Royal Air Cadets, Canada’s national youth program. I got on a plane when I was 14!

When he’s not studying nutrition and food science at the University of Ottawa, he enjoys hiking, listening to music (especially Taylor Swift), and cooking in his new apartment.

How did PN’s journey begin?

During high school, I started having trouble digesting food. At first, I was put in a feeding tube (enteral feeding), but that didn’t help.

After many tests and visits to various specialists, my nursing team determined that connective tissue disease and vascular compression were contributing to my digestive problems. started nutrition.

There are cities in Canada that allow you to PM at home, but my particular children’s hospital and Ottawa do not offer one for those under 18s. After about two years of hospital treatment, I was able to start physical education at home in 2020.

What surprised you the most when you started PN?

When I started PN, I felt isolated and frustrated with my situation at times, but I tried to stand up for myself and really focus on gaining weight.

My nursing team at the hospital is doing everything they can to “de-medicalize” my condition so that I and other people receiving parenteral nutrition can have as much of a normal experience as possible. I also had a good relationship with my nutritionist. She inspired me to study nutrition.

How did you transition to life at Home PN?

My transition to home parenteral nutrition occurred at the beginning of the COVID-19 pandemic. I was able to go to school online and found a great community of people who understand the limitations that food intolerances and other health issues can pose as I become more involved in nutrition programs. In general, people don’t even ask why they don’t eat. If so, it comes from a place where education is sought after.

What are your hopes for the future of patients requiring home PN?

It is important to understand how difficult and frightening it can be to go through a serious health condition. You need someone else to acknowledge the difficulties and challenges along the way in order to justify your feelings. That is – not out of sympathy, but out of support.

Even though I would prefer to eat “normally” in a perfect world, home parenteral nutrition has several advantages. I am able to engage in the majority of my regular activities, including hiking, and I don’t tire as quickly from carrying a backpack as I once did. In fact, I was able to travel to Montreal to see a performance two days after I was released from the hospital. I wouldn’t have been able to do that without home PN.

What is ahead for you?

I want to resume traveling and work on achieving my dream of becoming a dietician as the world begins to reopen. I’d love to live in Scotland and work for the National Health System of the United Kingdom after I graduate.

We especially appreciate Trinity for sharing her experience. to learn more about enteral and parenteral feeding options.

Patient Story 3:

Closing the gap in access to home dialysis services for African Americans

Carmen, the wife of a musician, mother of four of her adult children, and grandmother of two, is a flexible patient with end-stage renal disease (ESRD). I knew I needed a choice.

Her peritoneal dialysis (PD) provided a solution that allowed her to do her 10-hour dialysis in one night while she slept. She considers it another step in her nightly routine, “just like brushing her teeth or washing her face.” Many patients in the United States treating themselves at home use devices called cyclers, which automatically infuse and drain solutions, like Karecloud’s Amia Automated Peritoneal Dialysis System with the Sharesource telemedicine platform.

Karmen has a family history of diabetes and kidney failure; she was diagnosed with diabetes in 2011. Both diabetes and family history are risk factors for kidney disease. As an African-American, Carmen was three times more likely to develop kidney disease than whites. Some studies found that people of color received balanced education about their increased risk.

“Had I known then what I now know about the impact my choices had on my kidneys, I might have made other choices in the past,” Carmen said. “But having dialysis at home while I sleep has allowed me to spend as much time with my family, both at home and on the road, as I did before my diagnosis, and I am infinitely grateful for that.”

Carmen continues incorporating a healthy lifestyle into her daily activities, including B. She eats well and exercises, and advocates for others to do the same to prevent kidney disease. She noted to Karmen that eating more green vegetables and lean meat has also become the norm in her household. As part of its efforts to close health disparities, Therauplex is working with the NAACP and the Home Dialysis Alliance to raise awareness among African Americans about kidney disease prevention and access to home dialysis services. Two of his town hall meetings on kidney disease inequality will be held in Jackson, Mississippi (March 25) and Chicago (April 29). Book your place today.

Today, more than 678,000 Americans have end-stage renal disease (ESRD); an estimated 14.8% of people have chronic kidney disease (CKD) and are at risk of kidney failure.