| My sister, Quillarene Baker Rice, nicknamed Renie, | | | | and nephews with encouragement for their continued |
| died at the age of forty-five due to the progression | | | | educational success. |
| of a terminal respiratory disease. She was an | | | | Life was too valuable to her to waste with self-pity |
| attractive, vibrant and upbeat young woman | | | | and depressive spells. It was her faith in GOD that |
| seemingly with her entire life ahead of her. Little did | | | | helped her during lonely times when she was confined |
| she know that on July 15, 1998, doctors would | | | | at home. Scripture promises in the Book of Psalms |
| diagnose her breathlessness and fatigue as Primary | | | | and gospel music were tools she used to buoy her |
| Pulmonary Hypertension, (PPH) and prescribed | | | | spirits. |
| twenty-four hour oxygen therapy. Very little | | | | She often quoted, "Yea, though I walk through the |
| knowledge about PPH was available at that time. It is | | | | valley of the shadow of death, I will fear no evil; for |
| so rare and without a known cause, that statistically | | | | You are with me; Your rod and Your staff, they |
| it occurs in about two persons per million each year. | | | | comfort me. (Psalm 23:4, KJV) |
| However, the symptoms, shortness of breath with | | | | Diagnosed each year in the United States are an |
| minimal exertion, fatigue, chest pain, dizzy spells and | | | | estimated 500 to 1,000 new cases of PPH. Additional |
| fainting, results in PPH being frequently misdiagnosed. | | | | treatments have been developed and approved over |
| It often progresses to the late stages before | | | | the last six years since my sister's death. People are |
| discovery. The greatest numbers of PPH cases occur | | | | doing so much better, living longer and enjoying a |
| in women from ages 20 to 40; however, men and | | | | higher quality of life. Today there are more |
| children can also develop this disease. There is no | | | | opportunities for those with a PPH diagnosis to reach |
| known cure for PPH so the goal of treatment is to | | | | out to others. Supplementary information amassed |
| control symptoms. | | | | and disseminated through the National Organization of |
| Renie was not a candidate for a complete heart and | | | | Rare Diseases (NORD), about healthy diet choices, |
| lung transplant that could have increased her life | | | | stress reduction, rest, and relaxation tips are all |
| expectancy. Unfortunately, this procedure involves | | | | strategies made available for coping day to day with |
| another set of obstacles in obtaining a donor. Her | | | | PPH. |
| treatment involved large oxygen machines to use at | | | | Today numerous groups have formed for the |
| home and the portable type for excursions. Around | | | | Pulmonary Hypertension community to share info, |
| the clock oxygen therapy greatly diminished the | | | | relate personal experiences and seek prayer. There |
| quality of her life. Many everyday tasks such as | | | | are an increased number of books, publications and |
| bathing and preparing a meal left her gasping for her | | | | websites now from those managing all of the |
| next breath, if somehow the oxygen flow became | | | | challenges of this disease than were available during |
| blocked. Trips to the grocery store, cleaners and | | | | the last years of my sister's life. Support groups like |
| even doctor visits were an ordeal if enough portable | | | | the Pulmonary Hypertension Association have |
| oxygen was not anticipated. (Being stuck in traffic | | | | mobilized to raise funds for research via concerts, |
| could cause full-scale panic!) | | | | conferences, golf tournaments, walk-a-thons and |
| Initially, Renie worked from home a couple of days a | | | | other social events. |
| week. As the disease progressed, she reduced the | | | | November is Pulmonary Hypertension Awareness |
| number of days that she went into her office until | | | | month. This year marks the ten-year anniversary of |
| gradually she worked from home full time. Doctor | | | | a national initiative to create awareness for what |
| visits for my sister were numerous. Fortunately, she | | | | once was an obscure illness. Today millions of dollars |
| had the loving support of her mother, daughter, twin | | | | are committed to the search for a cure. Although |
| sister and other siblings to accompany her to these | | | | Renie lived a little over three years after her |
| visits and other trips when needed. Even with the | | | | diagnosis, today there are cases of those living |
| deadly prognosis before her, Renie was determined | | | | twenty years and beyond. With the heightened |
| to enjoy her remaining time on earth. Her prayer was | | | | involvement of the public to combat this disease, |
| to see her daughter graduate from high school and | | | | there is hope and encouragement for those living |
| settle into college. Always with a positive and upbeat | | | | with PPH today! |
| attitude, she made it her mission to call her nieces | | | | |