Double Lung Transplant Aries Stead
Donation protected
Hi, this is Jackie ( Aries' partner),a lot of you have been with us for awhile for this , but I will give some back story for those who haven't. Aries ,who is now 42 ,has been battling an interstitial lung disease since early 2012 when first diagnosed . The doctors are now calling this lung disease LAM (lymphangioleiomyomatosis), she also suffers from Pulmonary Hypertension. After struggling for three + years, Aries is now on the lung transplant list at Shands Universtiy of Florida in Gainesville .
Bi monthly Aries and I have to travel to the transplant clinic 5 hours away from home and stay in Gainesville for her follow up testing appointments .
So far as of today Feb 18th, 2016, Aries has been called twice to receive new lungs. The first call came on Valentine's Day but the donor lungs were not viable after the transplant center tested them with new FDA approved technology XVIVO Perfusion. Aries was then sent home only to return again Feb 17th for another call to the transplant center for the second attempt to receive donor lungs. Aries is still waiting to hear if these current donor lungs will be viable and once again the lungs had to be put into the XVIVO machine.
Went the transplant does happen Aries will have to live for up to 3 months no more than 10 minutes from the transplant center once released as well as maintain our current residence in SouthFlorida. Which means even though Aries receives a small amount of disability and tries to work a few hours a week, and I work as well, full time, neither one of us have any vacation or sick pay. Plus the pre and post medication co- pays are astronomical monthly . We do get by but that is it. We have had to use any savings through out the course of this 3-1/2 year journey.
Aries is the most bravest and strongest women I know . I don't want her to be stressed out about finances while she is fighting for her new lungs and her life. This whole process has been an emotional and financial roller coaster . We are asking if anyone can donate anything even $5 it's means a lot to us and really helps .
Thank you all so much. Please follow Aries and her quest for life on Facebook : Double Lung Transplant Aries Stead.
Jackie
https://m.facebook.com/DoubleLungTransplantAriesStead/
Bi monthly Aries and I have to travel to the transplant clinic 5 hours away from home and stay in Gainesville for her follow up testing appointments .
So far as of today Feb 18th, 2016, Aries has been called twice to receive new lungs. The first call came on Valentine's Day but the donor lungs were not viable after the transplant center tested them with new FDA approved technology XVIVO Perfusion. Aries was then sent home only to return again Feb 17th for another call to the transplant center for the second attempt to receive donor lungs. Aries is still waiting to hear if these current donor lungs will be viable and once again the lungs had to be put into the XVIVO machine.
Went the transplant does happen Aries will have to live for up to 3 months no more than 10 minutes from the transplant center once released as well as maintain our current residence in SouthFlorida. Which means even though Aries receives a small amount of disability and tries to work a few hours a week, and I work as well, full time, neither one of us have any vacation or sick pay. Plus the pre and post medication co- pays are astronomical monthly . We do get by but that is it. We have had to use any savings through out the course of this 3-1/2 year journey.
Aries is the most bravest and strongest women I know . I don't want her to be stressed out about finances while she is fighting for her new lungs and her life. This whole process has been an emotional and financial roller coaster . We are asking if anyone can donate anything even $5 it's means a lot to us and really helps .
Thank you all so much. Please follow Aries and her quest for life on Facebook : Double Lung Transplant Aries Stead.
Jackie
https://m.facebook.com/DoubleLungTransplantAriesStead/
Organizer
Jackie Diamond
Organizer
Hollywood, FL
