Decreasing wait time

****Warning - this post talks about the process of retrieving a heart from a donor, and includes a graphic photo and a link to a graphic video.  If you are squeamish or this will be a hard topic for you, please wait for our next post.****

When we first met with the surgeon, he talked about how there were some research studies that could make my wait times much less.  He mentioned "dead donor hearts" and the "transmedic" device, and suggested we go to youtube and search "heart in a box, UCLA".  My regular heart failure cardiologist also mentioned these technologies and spoke highly of them.  My understanding was that there is a new technology that keeps the heart warm and beating while it is transported, and while it is approved in other countries it is still considered research in the US because it has not been fully approved by the FDA.  I was told that once I was listed, someone from the research team would talk with me to see if I wanted to sign up for this.

I got the call on Tuesday that they wanted to talk, and as luck would have it, I already had an appointment scheduled with my electrophysiologist (pacemaker cardiologist) for the next morning.  I agreed to come early to hear about the study.  Peter and I had watched the video and both thought that it seems to make sense, so I was interested to get more information and most likely planning to agree.

I sat down with the research coordinator, and it was cool because it turns out she is actually part of the process of when they go to retrieve a heart and helps with the machine.  The company who makes the machine is Transmedic, and the official name of it is Portable 'Organ Care System' or OCS. A picture of the system is below. The company website has a great video that shows the machine in action, keeping a heart pumping.

https://www.transmedics.com/ocs-heart/?gclid=CjwKCAiA44LzBRB-EiwA-jJipCOfyTLQoib2bIecY76B2UOnVEfsG75W46G0twZY5WtHjFBJ01LriRoCodQQAvD_BwE

The OCS first was tested to see if keeping the heart beating and warm made more sense than putting it on ice.  When on ice, a heart can only last 4 hours before it is too injured to be used in a transplant.  With the OCS, which keeps its beating and warm, it greatly increases the time the heart can be out of the body.  The 500/250 mile limit on how far they normally look for donor hearts is because of this limitation with traditional transport methods.  Right now, 15 different hospitals around the country are signed up and are taking part in the research study to show that this is a reasonable way to transport hearts, and that the results are just as good.  Similiar studies in other countries have had just as good, if not better, results.  This means that for people who are signed up in the studies at those 15 hospitals, the geographic range they will look at is much, much bigger.

This does not mean that I get to 'jump the line'.  But think of it this way.  With having the OCS as an option, lets say that a heart becomes available in Wyoming.  They find the list of potential matches.  There may not be someone in that 500 or 250 mile radius who can use this heart.  Lets say there is someone who is close by but is a status 6, and I'm a status 4.  Because they could use the OCS, I could be offered it first (since I would be more severe).  Or, lets say that no one in that area can use it.  Normally, that heart would go unused.  Now, they can open up the range and if someone further out who is signed up in the study can use it, they can get it. This first study has closed and has great results, and they are going to submit for FDA approval of the device in April.

So for those reasons alone, I was excited about the study.  But then the research coordinator told me more about the machine.  Not only does it keep the heart beating, but it is taking readings and checking how the heart is doing.  If it starts to have problems, they can give it medications, adjust the flow rate, etc.  This means that there is a slightly higher risk of a 'dry run' as they may think a heart is good but once its in transport realize it is not as good as they thought, but these are things they have no way of knowing using the traditional method.

Because of these capabilities, the company started the EXPAND study to try to expand the pool of donor hearts.  Only a small percentage of people who are willing to donate a heart can actually do so based on a lot of factors, but mostly because there are the limitations to traditional transport.  Apparently, older hearts (over age 50) do not transport very well on ice, so even though those hearts could still have years on them, they often are rejected.  Sometimes a heart will have something about it that is not entirely perfect, like a slightly wider septum (middle heart wall) or something else like this, and traditionally they did not have a way to see if the heart would work as well so would not use it.  Now, with the OCS, they can get more information during transport to know if it has a good chance of working.  It also means that these hearts can be considered for people who may usually wait a really long time, or who are older, or who really need a heart right away.  Since only 15 hospitals are a part of this, that means that this expanded pool is only open right now to people who are signed up for the study.  The goal is to show that these hearts can have similar results to the traditionally used ones, to where it would increase the overall pool.  But in the meantime, I am eligible to be considered for these hearts.  The doctors are still going to be really picky about what hearts they will use, but it does open up possibilities.

And if that wasn't enough, a new study opened in November called the Donors from Circulation Death (DCD) Trial.  Traditionally, hearts are only eligible to be retrieved if the donor is brain dead.  The surgical team would come in once the family has decided to pull the plug, and they would stop the heart and retrieve it in the operating room (OR).  For most organs from deceased donors, they can be retrieved up to a few hours after the heart stops and still be viable.  Hearts are typically only viable for up to 30 minutes after life support is removed.  In this study, they are expanding the pool of donor hearts again by considering donors who have a life-threatening injury, but are not technically brain dead (which is a really strict process to call someone that).  If the families agree that they want to donate the organ, they would pull the plug in the OR and the surgery team would be on standby.  If it takes less than 30 minutes for the donor's heart to stop beating, then it could be eligible for transplant with this study.  The research coordinator said that these hearts tend to be from younger donors.  Once again, only people signed up for this research study have access to these hearts.  Peter and I decided to sign up, and I was randomized to the group that has access to them (it was a 50/50 chance).

So what does this all mean?  I have no idea right now what heart I will get.  But in addition to the traditional pool, I will have access to being considered for the EXPAND and the DCD trial hearts, so it may not take as long to find a march.  My transplant surgeons will decide if the heart seems like it will be a good fit, and when I get the call to offer me one I will get to know the age of the donor, the rough area they are in, and some details.  If it is an EXPAND or DCD heart, after I get that information I can decide if it sounds good enough, or if I want to wait for more of a traditional heart.  Since I was told I would need a transplant 13 years ago, my worst fear was getting sicker and sicker on the list and dying before they can find me a heart.  Signing up for these studies makes me feel a lot better about having a successful transplant.

I'm also excited to be able to have my experience help advance science.  Regardless of which type of heart I get, information about my outcomes will help to determine if this technology is safe and effective.  If it is, some scientists have calculated that this could increase the number of available hearts around the country by 30%!  It would be amazing if people who are in my shoes in the future don't have to worry as much about having a heart become available.

I'm sorry if this post sounds clinical or insensitive.  I am very aware that in order for this to happen for me, someone's family is going to have to go through a tragedy.  One common misconception about organ donation is that they don't work as hard if you are a donor.  This is NOT true at all.  As you can see, it is only once it is clear that a person is not going to be able to survive that they consider this.  I pray for the donor families, and hope that they are able to find comfort in the idea that their loved one is able to do good even after they are gone, and that a part of them is living on.