Macie's PH Battle
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Macie Renee Paige was diagnosed with severe Idiopathic Pulmonary Hypertension on Thurs., August 25, 2016 and she also had to have a Doppler ultra sound of her legs that day to check for blood clots. On Tuesday, August 30th, she had an echocardiogram and her cardiologist immediately referred her to a PH specialist in Dallas, both of these tests were prior to insurance coverage that was effective September 1st.
Pulmonary Hypertension (PH) is a rare lung disorder in which the arteries that carry blood from the heart to the lungs become narrowed, making it difficult for blood to flow through the vessels. As a result, the blood pressure in these arteries -- called pulmonary arteries -- rises far above normal levels. This abnormally high pressure strains the right ventricle of the heart, causing it to expand in size. Overworked and enlarged, the right ventricle gradually becomes weaker and loses its ability to pump enough blood to the lungs. This could lead to the development of right heart failure.
PH occurs in individuals of all ages, races, and ethnic backgrounds, although it is much more common in young adults and is approximately twice as common in women as in men. Macie’s pulmonary-artery pressure was 10 times the normal pressure and her heart was enlarged due to it being overworked to push oxygenated blood into her lungs and throughout her body to other vital organs. Macie was told by her specialist in Dallas that she is like a unicorn, she is the rarest of the rare…… 2 people per million have familial PH and the likeness of her disease to her biological mother (Dana Sadler Mills) is uncanny and scary. Dana died at the age of 25 years in 1999 when Macie was only 20 months old. There was little known about PH back then and there was only 1 medication to treat this disease as opposed to the 14 drugs available now.
Macie had two full days of tests at UT Southwestern in Dallas on September 1st and 2nd On September 15th, she had to be admitted to the hospital at UT Southwestern in Dallas to have a central line inserted into her chest. This line administers life-saving , 24 hour iv medication called Veletri. Macie also takes Revatio and Lasix orally on a daily basis to fight this devil disease. She will be on medication for the rest of her life and will have doctor visits, hospital stays and side effects. She was in her first week of college when she got this diagnosis and her specialist told her that it would be best for her to sit out this semester of college due to the side effects of her medication and getting use to her life with a pump. Macie’s response was, “that is not an option, I love Tarleton”. She dropped from 16 hours down to 7 hours and has had the full support of this awesome college to help her in any possible way they can. Tarleton and its staff have given a new meaning to the word “family”. Macie cannot work, due to her need to rest when she is not in classes or doing homework. She is trying to live as normal of a life as she possibly can, which is all she wants, to “be normal”. The deductible and out of pocket expenses for her medical needs are over $6,000.00 and this does not include other expenses she incurs. Macie has conquered a lot in her lifetime since her mother’s death and she has gone through more in her 18 years of life than many of us experience in a lifetime. Through it all, she has remained positive, kept a great outlook on life, forgiven and kept that beautiful smile shining bright.
Macie asked her aunt (her mom’s sister, Darla Duty) to adopt her this past April and Macie finally got to “be a kid”. She lived with her “mom” through the summer and applied and got into Tarleton and did receive some financial aid, but it doesn’t cover all of her personal expenses or all of her college fees. Her mom has taken her to all her doctor visits, stayed in the hospital and has used all of her vacation and sick days……so, now her days missed are lost wages. Macie has received help from her mom (Darla Duty), grandmother (Linda Sadler), uncle, aunt (Darren & Dedria Sadler) and sister and brother in law (Madyson & Phil Cox) and some dear friends, but we know there will be way more to come.
Many have asked us about setting up a gofundme page due to the convenience of donating online, so if you would like to make a donation, this may be an easy way for you to do so. Thank you for your generosity and support and remember that #maciewillwin.
Pulmonary Hypertension (PH) is a rare lung disorder in which the arteries that carry blood from the heart to the lungs become narrowed, making it difficult for blood to flow through the vessels. As a result, the blood pressure in these arteries -- called pulmonary arteries -- rises far above normal levels. This abnormally high pressure strains the right ventricle of the heart, causing it to expand in size. Overworked and enlarged, the right ventricle gradually becomes weaker and loses its ability to pump enough blood to the lungs. This could lead to the development of right heart failure.
PH occurs in individuals of all ages, races, and ethnic backgrounds, although it is much more common in young adults and is approximately twice as common in women as in men. Macie’s pulmonary-artery pressure was 10 times the normal pressure and her heart was enlarged due to it being overworked to push oxygenated blood into her lungs and throughout her body to other vital organs. Macie was told by her specialist in Dallas that she is like a unicorn, she is the rarest of the rare…… 2 people per million have familial PH and the likeness of her disease to her biological mother (Dana Sadler Mills) is uncanny and scary. Dana died at the age of 25 years in 1999 when Macie was only 20 months old. There was little known about PH back then and there was only 1 medication to treat this disease as opposed to the 14 drugs available now.
Macie had two full days of tests at UT Southwestern in Dallas on September 1st and 2nd On September 15th, she had to be admitted to the hospital at UT Southwestern in Dallas to have a central line inserted into her chest. This line administers life-saving , 24 hour iv medication called Veletri. Macie also takes Revatio and Lasix orally on a daily basis to fight this devil disease. She will be on medication for the rest of her life and will have doctor visits, hospital stays and side effects. She was in her first week of college when she got this diagnosis and her specialist told her that it would be best for her to sit out this semester of college due to the side effects of her medication and getting use to her life with a pump. Macie’s response was, “that is not an option, I love Tarleton”. She dropped from 16 hours down to 7 hours and has had the full support of this awesome college to help her in any possible way they can. Tarleton and its staff have given a new meaning to the word “family”. Macie cannot work, due to her need to rest when she is not in classes or doing homework. She is trying to live as normal of a life as she possibly can, which is all she wants, to “be normal”. The deductible and out of pocket expenses for her medical needs are over $6,000.00 and this does not include other expenses she incurs. Macie has conquered a lot in her lifetime since her mother’s death and she has gone through more in her 18 years of life than many of us experience in a lifetime. Through it all, she has remained positive, kept a great outlook on life, forgiven and kept that beautiful smile shining bright.
Macie asked her aunt (her mom’s sister, Darla Duty) to adopt her this past April and Macie finally got to “be a kid”. She lived with her “mom” through the summer and applied and got into Tarleton and did receive some financial aid, but it doesn’t cover all of her personal expenses or all of her college fees. Her mom has taken her to all her doctor visits, stayed in the hospital and has used all of her vacation and sick days……so, now her days missed are lost wages. Macie has received help from her mom (Darla Duty), grandmother (Linda Sadler), uncle, aunt (Darren & Dedria Sadler) and sister and brother in law (Madyson & Phil Cox) and some dear friends, but we know there will be way more to come.
Many have asked us about setting up a gofundme page due to the convenience of donating online, so if you would like to make a donation, this may be an easy way for you to do so. Thank you for your generosity and support and remember that #maciewillwin.
Organizer
Macie's PH Battle
Organizer
Decatur, TX
