The Waiting Game (Life on the Transplant Waiting List)

Posted: April 17, 2012 in Daily Life, Health, Heart, My New Normal
Tags: , , , , , , , , , ,

Back in October of 2011, when I was in the hospital, I qualified to get on the waiting list to be blessed with the gift of a donor heart when one became available.  There are so many contributing factors that can cause you to not be a candidate for a spot on the list.  They take into consideration your entire health history (you and your family’s), behavior (drugs, smoking, risky sexual activity, and alcohol use), weight (& BMI), living conditions, a psychiatric evaluation, and many more contributing factors. It is a pretty important gift to give someone, so they are thorough in the qualification process.

Once I had my Left Ventricular Assist Device (LVAD) implanted, I had to go on “hold” status rather than “active” to allow my chest to heal from the chest crack surgery that allowed them to implant the LVAD. I didn’t go back on “active” status until December of 2011.

The list has a few categories, but most important ones are 1A & 1B.  Status 1A usually refers to a patient that has an emergency need for a heart and is usually currently hospitalized while waiting for such a heart. Status 1B refers to those with just as much need, although their health allows them to continue to pursue living their lives outside of the hospital.  I am officially on the list as Status 1B.

There are almost as many conditions for a heart to be matched to someone once a donor heart is available such as; blood type, tissue match, size, health of the organ, etc.  So it is typically quite the wait for a perfect match.  I was told that here in the Midwest (Region 7 of the UNOS map), it could take an average of 2 years, based on my blood type alone (O+). So mentally, my wife and I have conditioned ourselves that it would be a two year process.

There is also something called “Prime Time” for someone with an LVAD. It is a period where for 30 days you can be elevated to the top of the list (for your organ requirements) for 30 days.  It is usually a period where there is determined to be no one else with your same needs that is an emergency 1A, as they would always get priority. So, on Easter Sunday, we received the call that I would be moved into the “Prime Time” category and if a heart in my requirements comes in, and there is no emergency need for it elsewhere, I will get “The Call” to come in for a transplant.

This is exciting and scary at the same time.  Our family has started focusing on the fact that this may happen sooner than later, and after a few days of shock, waiting for this to sink in, my bags are packed to go to the hospital.  We are also very much focused on the gift that a donor will be giving to me, and pray for that donor and their family, as they will undergo the pain of losing a loved one, even though a gift may help another live. I will be setting up a Caring Bridge page as well to update people when that happens.  So if I disappear from here, Twitter, and Facebook for a few days, it might mean that I got “The Call”.

Prayers are always welcomed, and it would be great if you chose to be a donor and gift someone else in the tragic event that something happens to you.  In the Midwest you can click here: www.donatelifemn.org

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