One of the most touching stories about how the gift of a heart that united two families. Taylor Storch, a thirteen year old girl who died in a skiing accident, donated her heart to Patricia Navarino-Winters, a women whose heart was broken because of PPCM. In the video below, NBC interviews Taylor's mother and father, Todd and Tara Storch and Patricia Winters and tell the story of how they found each other and how Taylor's heart leaped within Patricia, at the presence of her mother.
http://www.msnbc.msn.com/id/21134540/vp/39456201#39456201
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Taylor's parents formed a foundation in her honor that promotes organ donation. The organization's website can be found
Taylor was an avid internet user and she has uploaded 64 videos online. Here is one of her videos. Watching her videos, is like feeling her presence. http://www.youtube.com/user/taylorstorch/videos?view=0 links to all her youtube videos and Googling "Taylor Storch", returns pages of search results. What an amazing young girl, and the gift of life that came from her death.
Sadly, Patricia died on 19th December 2013 of a fatal arrhythmia. It's so important to have early diagnosis. Patricia was a labor and delivery nurse and because she was assumed fit and healthy, the diagnosis of PPCM was missed. Her heart was ablated 3 months post delivery but they never did an ECHO prior to the ablation to realize that it was PPCM causing her heart issues. One week after the ablation, her EF was 10% and never went back up. She waited 2 years for a heart transplant, which she received in 2010.
"3 months post baby, they ablated my heart thinking I had AFib and SVT, but they NEVER did an echo prior to ablation to realize that it was actually PPCM causing the arrhymthias in the first place. One week after ablation I couldn't breath and had EF of 10% and it never went back up. ...and to top it off -I am a labor and delivery nurse-and I or any of the other nurses or physicians knew what was wrong with me. It was all right under our eyes the whole time. Different now though."
Heart transplants have complications but Patricia received a gift of life from Taylor and lived a full life with her heart transplant.
The prognosis for heart transplant patients as of June 5, 2009, the survival rates were:
- 1 year : 88.0% (males), 86.2% (females)
- 3 years: 79.3% (males), 77.2% (females)
- 5 years: 73.2% (males), 69.0% (females)
(Source http://en.wikipedia.org/wiki/Heart_transplantation#Prognosis )
The average life expectancy being 15 years.
However, with PPCM, the post transplant outcomes are inferior to other heart transplant recipients.
"The United Network for Organ Sharing database was queried for cardiac transplants, comparing characteristics and outcomes for PPCM, other women, and all others.
Between 1987 and 2010, 42,406 patients (9,419 women and 32,987 men) received a heart transplant. Of these, 485 women who had PPCM as the indication were younger (p < 0.001), had higher sensitization (p < 0.001), required higher intensity of cardiovascular support pre-transplant (p = 0.026), and had higher listing status (p < 0.001). Those with PPCM had more post-transplant rejection during the index transplant hospitalization (p < 0.001) and during the first year (p = 0.003). Comparing PPCM with other women and all others, graft survival was inferior (p = 0.004 and p < 0.003, respectively) and age-adjusted survival was lower (p < 0.001 and p = 0.02, respectively)." http://www.researchgate.net/publication/221805977_Peripartum_cardiomyopathy_post-transplant_outcomes_from_the_United_Network_for_Organ_Sharing_Database
Peripartum cardiomyopathy, an autoimmune manifestation of allograft rejection? Article can be found http://www.researchgate.net/publication/223414795_Peripartum_cardiomyopathy_an_autoimmune_manifestation_of_allograft_rejection
Rest in Peace, Patricia and Taylor.
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Myheartsisters.com has been developed to raise awareness about heart failure in pregnancy (PPCM) and provide support for heart sisters through storytelling and friendship. Anyone can join. How to Join - Join as a heart sister, cardiologist or relative of a deceased heart sister or join as a community member.
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