Tracleer and PPH News
Rare condition affects girls lives
Families appreciate daughters' life with Pulmonary Hypertension
Brandy Slagle News-Bulletin Staff Writer; bslagle@news-bulletin.com
Los Lunas Only two out of one million people will be affected with a rare heart condition now known as Pulmonary Hypertension, which might make some people discount its severity.
However, sit down with Micah Toma-Buffalow or Lindsay Alderete, two Los Lunas mothers, and they can explain how dangerous and real the problem is.
Both have daughters that struggle, and will continue to fight, with the condition.
Pulmonary Hypertension, or PH, means there is continuous high blood pressure in the pulmonary artery of the lungs. Eventually this can result in an enlarged heart, which could loose its ability to pump.
It's not something a new mother wants to hear.
"It's vital that awareness is raised," said Alderete. "Most patients have to go to three doctors before they are diagnosed. We even took her to a pulmonary doctor, and he didn't know about it. That's scary that even a pulmonary doctor couldn't figure out what was wrong."
Alderete said her daughter's birthday parties are more than just celebratory. Her daughter Eliana turned two last July.
"We're standing around singing happy birthday and just bawling," she said.
As she speaks Eliana sits next to her mother, taking turns between coloring and throwing a bright plastic ball to her cousin Talysa Ogas.
Ogas, a senior at Los Lunas High School, spent the entire month of November trying to raise awareness about PH. She even organized a fundraiser with her classmates in student government, selling root beer floats and PH hope bracelets.
"We raised about $1,000, which all goes to PH research," said Ogas.
Alderete spoke at several boards in Los Lunas and even managed to make November PH awareness month in the Village of Los Lunas.
"People see her, see her tube, but they don't ask. I think they are nervous to ask," said Alderete. "We want them to know what it is and what is going on."
The tube is Eliana's direct life line. The Alderete's even informed local emergency medics on what to do in case the tube came out. Should Eliana be without her supply of Flolan, even for a few minutes, she could die.
Her family had one close experience earlier this year upon discovering the tube had come loose and slipped out. Ambulances were called and a helicopter sent for Eliana.
Alderete said the tube was out for at least 30 minutes.
"Even the doctor's said that she was still alive was a miracle. We prayed over her the entire way to the hospital," she said. "You never think that something like that is going to happen to you."
Toma-Buffalow knows how Alderete feels seven times over — her daughter Bailey has been lost and revived seven times in the past three years.
For having been through such a series of medical ordeals, Bailey is warm-natured and friendly, quick to give hugs and smiles to strangers.
Born three months premature, Bailey and her twin sister Cierra both have medical complications.
However with Toma-Buffalow, you would never guess it by looking at them.
Bailey moves freely around, performing somersaults and curiously digging in bags. The only evidence of her trauma is a long scar up from her stomach over her chest and a diagonal scar on her back.
Bailey has recently been feature in Newsweek and on Inside Edition. Toma-Buffalow has even granted interviews to London papers.
"The doctors told me that she was the first one to be given Viagra to treat her PH," she said. "People are looking at what it can do for other things. When they first tell you about Viagra, you think, you have to be kidding me."
Toma-Buffalow took the chance and the pressure on Bailey's heart dropped and nearly leveled off during the next few months.
"They don't know what it will do in the long run. It might give her attention problems. She might have a little more hair because of the hormones, but what is a little more hair when I can have my daughter here with me," she said.
In their individual battles to promote awareness of PH to Los Lunans the two mothers never knew that another person in town shared their experience.
"It just gave me chills. I couldn't believe it," said Alderete. "It makes me all the more sure that we need to spread the word about this. People need to know."
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