“My experience is that organ donation is not on your radar unless it becomes personal. But it can get personal very fast - ask my family and friends. We don’t think about our heart beating over 100,000 times a day, that we take over 20,000 breaths a day until we can’t. We usually don’t think about dying until someone says you are going to. We don’t think about the 117,000 people on the organ waiting list not knowing whether they are waiting to get the organ they need, or waiting to die. We can change that." - Howard Romanoff This was written by my husband Howard, after his life-saving double lung transplant. As he said, the issue surrounding organ donation can get personal very fast. For us, our family and friends, it unexpectedly started in October 2007 when Howard was diagnosed with a life threatening lung disease, Ideopathic Pulmonary Fibrosis. Until a few months prior, Howard was healthy and had no underlying medical issues.
Howard’s lung transplant was possible due to an anonymous donor. We are reminded daily of the selfless gift of Howard’s donor. With this in mind, our family has begun Share Life, our effort to pay this kindness forward. Share Life’s goal is to help others get a second chance at life through organ donation, like Howard did. There is information about donor registration and organ donation on the Share Life site as well as Howard’s story. The site should help answer the many questions surrounding the issue, if not, please contact us at Share Life.
We have also become involved with the New York Organ Donor Network volunteering and supporting their work to increase understanding and awareness about donation and transplantation in the metro NY area. April has been designated National Donate Life Month. NYODN has launched the Hate the Wait advertising campaign and has events scheduled throughout the month to raise the spotlight on this issue. Our dear friends at Zaro’s Bakery are launching a campaign in their NYC stores. Our local community; hospital, schools, religious leaders and town are all participating to help us spread the word about the need to increase the donor registry. We are very appreciative of the support of family, friends, and community throughout this journey. At Romanoff Elements, we will be donating a portion of April sales to the NYODN.
We are grateful for Howard’s surgery. Howard's lungs deteriorated and he was using oxygen 24/7 to breathe. He was on the "wait list" for 6 months until he received the transplant at NY Presbyterian Hospital in NYC in August 2010. The medicine that enables transplantation is remarkable, as are the pulmonologists, surgeons and medical support.
The wait for the transplant was long, Howard’s health declined rapidly and we were not sure if he would get his transplant in time. The reason that he had to wait for those months is simple; there are not enough organ donors in New York State. There are 10,000 people on the waiting list in NYS, and someone dies every 15 hours waiting. This is an issue throughout the country, with over 117,000 people on the wait list in the US. Over 28,000 life-saving transplants were performed last year. My husband was one of 25 double lung transplants in NYS.
Howard has been speaking about his experience as well. Last April he spoke at the American Academy of Medicine in NYC to a UNOS (United Network of Organ Sharing) Conference of transplant professionals about being a transplant recipient. Here is the link to his talk, A Breath of Inspiration.
As Howard said, “Organ donation gets very personal, very fast”. We, along with our children, family and friends, learned this the hard way. We hope that New Yorkers will respond, and see that being a donor is a wonderful gift that is easy to give. We hope that the donor registry will increase, that others will not have to wait, getting sicker each day, as Howard did, hoping, but not knowing, if a life-saving organ will become available.
In August 2012, we happily celebrated Howard's First Re-Birthday with family and friends and can now look forward to more occasions together.
In NYS, it’s simple and quick to register to be a donor, at HatetheWait.org. The national registry can be found at Donate Life America. Our hope is that the donor registry will grow and many more on the wait list, including thousands of children, can be given a second chance at life. We love reading the wonderful stories about lives saved through transplantation, and we hope there will continue to be many more.
“After all", Howard asks, "if someone asked you – If you had the opportunity to save a life at no risk or cost, would you? I think the overwhelming answer would be yes.”