Friday, May 13, 2016
Patients transition from pump delivery to oral medication
“I have my life back.” Those are the words of Christine Luczak, 65, of Armada, who was diagnosed with a rare disease that affects 15 out of 1 million people, PAH, or pulmonary arterial hypertension.
The disease causes high blood pressure in the lungs, affecting their ability to carry adequate blood and oxygen to the rest of the body. Over time, this causes the heart to weaken and fail. Those with PAH experience breathlessness, fatigue, dizziness, swollen legs and ankles and fainting.
“I couldn’t do anything. I couldn’t catch my breath,” Luczak said. Since there is no cure, the goal of therapy is to slow down the progression of the disease and improve quality of life. Therapies range from pills to inhaled medication to medication that infuses into the body via a pump.
Luczak was diagnosed by Samuel A. Allen, D.O., medical director of the Pulmonary Hypertension Center at Beaumont Hospital, Troy. Beaumont is one of only a few centers in Michigan that treats this rare disease. With Luczak’s declining condition, Dr. Allen decided to treat her with medication infused through a catheter in her abdomen.
“Christine’s state was so severe, we had no other option than to administer medication via the pump,” said Dr. Allen. The medication infuses 24 hours a day via a pump that cannot be stopped for any reason without the threat of further decline or even death within minutes to hours.
“I knew I needed this therapy to save my life, but I was afraid to drive or go anywhere. I was afraid to go to sleep at night in fear that the pump would stop or get disconnected,” Luczak said.
This is amazing. I have my life back and I am forever grateful,
Christine
Simple pleasures, such as taking a bath or swimming, were no longer possible with the pump. The tradeoff was hopefully a longer life expectancy. Over time, she became accustomed to the therapy and was content to use it for the rest of her life
In December 2013, however, a new medication was approved by the Food and Drug Administration called Orenitram. This medication made it possible for patients to take pills instead of being connected to a pump.
"When Orenitram received FDA approval, the first person we thought of who would benefit most was Christine. My goal was to liberate her from the pump and transition her to the oral form. I knew this was going to take about 6 months to plan as this has been very infrequently done."
Luczak was admitted to the cardiac intensive care unit at Beaumont, Troy, in January where the transition off the pump and on to oral medication took place. The team worked for six months preparing the protocol for the transition since, according to Dr. Allen, “with this medication being so new, there are no evidence-based protocols for transitioning a patient from pump to oral medication delivery.”
The transition went well and Luczak was able to turn the pump off on her own before being discharged home.
“It was such an exciting and emotional moment for all of those involved in this transition process,” said Jacqueline Brewer, clinical coordinator for the Pulmonary Hypertension Center. “It was truly a team approach between the patient, her family, and the medical team here at Beaumont. It’s almost too good to be true.”
The team effort was the highest dose transition outside of a clinical research trial.
When asked about the future, Luczak said, “I want to swim. I want to travel. I can actually sleep on my stomach now.” She is thankful to the medical team and says the experience at Beaumont made her “feel like a queen.”
Even though she has an unknown life expectancy with PAH, Luczak says she has more opportunities for a better quality of life now than she did while on the pump.
“This is amazing. I have my life back and I am forever grateful,” she said.