A couple a days ago I posted a message to the PH Association message board. The response was quick and wonderful. It is great to the engagement and how they support each other. Several people suggested Flolan a medicine that I don’t recall we have discussed with Elliot’s doctor.
“Flolan or epoprostenol is a man-made form of a naturally occurring molecule in the human body called prostaglandin which helps the body open blood vessels. This synthetic substance contained in Flolan is called Prostacyclin.
Doctors use Flolan (Prostacyclin) to treat patients with Primary Pulmonary Hypertension (PPH). Flolan is helping many severely ill patients who do not respond to treatment with calcium channel blockers such as Nifedipine. Flolan imitates the natural prostaglandin produced by the body to keep blood vessels healthy by removing the build up of lipids, lowering blood pressure. People respond to increased doses of Flolan which dilate, or open up, blood vessels in the lungs and throughout the body. This Flolan-Prostacyclin also appears to prevent blood clots from forming. Flolan has been studied in clinical trials, and is an FDA approved drug treatment for PPH.
Flolan is administered intravenously directly into the bloodstream through a surgically implanted catheter by a portable, battery-operated pump. The pump is worn attached to a belt around the waist or carried in a small shoulder pack. Since the drug lasts only 3-5 minutes it must constantly be infused: it is slowly and continuously pumped into the body through the permanent catheter placed in a vein in the neck or chest. The pump is filled daily with the mixed Flolan solution.” From www.flolan-center.com.
Sunday, June 7, 2009
Monday, June 1, 2009
Carpe diem
This weekend my wife Marie was away to meet other mothers who have heart related diseases. The weekend that was arranged by The Swedish Heart-Children's Association and Marie was a positive but tired when she returned. At home, grandma came and stayed with us while Marie was gone and we have had some nice days with great weather. Yesterday Elliot told us he had so much run in his legs and to hear him say something like that makes me feel very happy. I and Marie talks a lot about to live here and now and not to focus on what might happen with Elliot. Sometimes this is impossible but we try to do our best.
Today has been a good day.
Today has been a good day.
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