I have been on the list for 163 days now. which isn’t a lot compared to some friends I know who have been waiting over two years.The question we get asked the most is how does the wait list work. Well, it’s definitely not like a deli counter line. You do not wait for your number.
The way transplantation works is, there are four statuses 7, 2, 1b, and 1a. The bottom status is 7, this means you are listed but you are unable to have surgery to due the flu or another issue, next is status 2. This is where I currently am. I need a heart but not right away. I am living at home, on oral medication and oxygen. Next is 1b, this means you need a heart soon. You may have an artificial pump like an LVAD or are on iv medication but you still live at home. The last status is 1a. You need a heart immediately and are living in the hospital until you get one. I hope I am never status 1a.
In order to determine you gets a donor heart, it works something like this. Everyone is listed nationally by number and broken down into OPOs, which stands for Organ procurement Organization. Our OPO is CORE (Center for Organ a recovery and Education), which I am a volunteer for. CORE spans 500 miles and includes parts of Pennsylvania, New York and West Virginia. There are 7 hospitals in this region. So in terms of “competition” it would be the patients listed at these 7 hospitals. So say someone dies and they are a registered organ donor. First CORE is contacted that they may have a possible donor. After the CORE representative talks with the family, things start to roll. Information is entered into the UNOS database, this is the United Network of Organ Sharing “the list”. Blood type, tissue type, antibodies, height, weight and location are entered. Once this is done, the match is determined based on these factors and my status. If more than one patient matches all the criteria then the deciding factor is who has been waiting longest or is in need more.
We are basically on call. The call can come day or night at any time, and we have to be ready to move. The donor heart can only stay outside of the body for four hours, so time is of the essence. want me at the hospital before they remove the heart from my donor’s body, so everyone is in position ready. Once the heart has been removed the doctors at that hospital will inspect it, then send it to my hospital for inspection by my surgical team. At any time, the transplant can be called off. I will be in the OR waiting when the heart reaches my hospital. There is a lot of behind the scenes work going on. Most of our friends and family know about our new traveling radius. We can’t go further than thirty miles from our house in case the call comes in. It will take us two hours (in good weather) to get to Pittsburgh and I will need to shower first also. The surgery itself will take anywhere from 8 to 12 hours due to my anatomy and scar tissue. then its to the ICU, then the step down unit on the 9th floor for about two weeks.
People always ask me if I am scared to have my heart cut out and another one put in. No, I am not scared of the surgery. What I am afraid of is not ever getting the call. There is a serious shortage of organ donors and every day 21 people die waiting. I do not want to be one of them.
Be a hero. Be a Donor.