Sometimes it hits you….This is not a cure. Heart transplant is the only treatment for Danon.
Hannah will have her 6 month heart cath and biopsy tomorrow morning on June 18th. Although we are settling into a much less stressful “normal” than experienced over the course of the last two years, at Biopsy time, you realize this is not the norm. This is transplant life. Beautiful most days, terrifying on others.
I want to take a moment and talk about this precious gift, Hannah’s donor heart. This beauty traveled with someone else on their journey. This amazing heart was along for the ride during another human being’s story, until their journey on planet Earth came to an end.We know nothing about the donor or their family really. Hannah’s dad heard hospital staff mention it was from another “teenager.” That is all we know about demographics. Demographics do not mean that much to me, although this is usually what people are curious about. I can understand that. I often think of it in terms of a person’s life journey. That precious life continues in the hearbeat within my daughter’s chest.
There is no way to predict how long this heart will last. This is one reason why biopsy day is scary. It is not a walk in the park. When she is wheeled away with each biopsy, her dad and I sit in her room silent, sometimes mentioning to one another that this never gets easier. But let me tell you the journey Hannah and this new amazing heart have experienced together since December 9th when they were introduced to one another.
Prior to transplant, Hannah reached a point that she was barely able to get off the couch as she had very little energy and nearly constant stomach problems. Nausea and vomitting are not the usual symptoms for adolescents with heart failure, but Danon Disease is it’s own special type of terrible. I worried Hannah was losing hope. I could see it in her eyes. Post transplant she said to me “This heart feels strong. I never knew it was supposed to feel this way.”
Hannah enjoyed Christmas morning where we all shared lots of happy tears, as well as sad ones for the donor family. I couldn’t get them off my mind. Our family held a moment of silence for the donor, and will continue to do so on holidays and whenever else it will feel appropriate. As the winter continued Hannah stayed inside a lot due to fears of her possibly being exposed to Influenza. She returned to school on a very limited basis a little over a month post transplant. We met with her school counselor prior to her return and watching her friends run up and hug her was magical to say the least. There Hannah stood in her high school, sans Millirone bag and picc line, new heart, and beautiful pink cheeks.
In the next few months, Hannah picked out a prom dress, attended prom, went wedding dress shopping with her sister, painted several canvases, hung out with friends, sang in choir concerts, attended 2 more fundraising benefits for COTA in her honor, met Illinois Secretary of State Jesse White, and talked with a group of high school students about how organ donation saved her life. On May 19th, Hannah graduated Gold Delta. Hannah graduated with HONORS after surviving a cardiac arrest, heart failure, and a heart transplant. Within the last month, Hannah has started a new part time job working with children, and recieved her first paycheck.
WIthout the donor/and or donor family, these memories and precious milestones would not be possible. There are no words……
Going forward we are wrapping up the first 6 months of the COTA campaign in honor of Hannah. We will be holding a paint like me fundraiser on the 2 year anniversary of Hannah’s SURVIVAL of Cardiac Arrest. (Look for an update on this in events coming soon)
We are very thankful for the life Hannah has enjoyed since recieving her healthy heart. I can’t wait to see what the next several months has in store for her!
Liz (Hannah’s mother)