Many people have asked us questions about how they decide who gets which heart. The United Organ Sharing Network (UNOS) changed the rules about how people are listed for transplant a few years ago to help people get listed sooner, and hopefully decrease the number of people waiting on the list who either get too sick for transplant or die waiting for an organ. In the old system there were three classifications - 1a, 1b, and 2, and it had much more stringent criteria to get on the list (you had to be really sick). With the new system, there are 7 classifications and you can get listed sooner (but still have to be sick).
For all the levels, when UNOS gets the notification that there is a heart available, they are going to look in the system; taking into consideration things like blood type, weight/height, and other immune markers. This will give them a list of all the people who the heart would be the best match for. They will then look locally and try to match to the person who has the highest level and has been waiting longest. If there is no one in the highest level, then they start looking at lower levels. Once you are on the list, you start accruing time. Time you accruing at a higher level counts if you move to a lower level, but time at a lower level does not count towards the higher. The time is cumulative overall.
Level 1 - You are living in the hospital connected to a device that is either making your both of the chambers of the heart beat, are connected to machines that can oxygenate and pump your blood for you (ECMO), or have a life-threatening arrythmia (issue with heart rhythm).
Level 2 - You are living in the hospital and are connected to a device that is making the left side of your heart beat (LVAD), or have a balloon pump, or are having arrythmia's that could be life-threatening but aren't all the time, or need a mechanical ciculation device that is failing
Level 3 - You are living in the hospital. You have one of the devices from level 1 or 2 but have been doing ok on them for a period of time, or need to be on IV medications that you can only get in the hospital, or you have a mechanical circulation device that is having a problem (but not failing)
Level 4 - You can live at home. You need IV meds but can have them at home, or you have congentital heart disease, or a few other serious conditions, or you need a re-transplant. This is the status I am currently listed at
Level 5 - You are on the waitlist for a heart and at least one other organ at the same hospital
Level 6 - All other active candidates
Level 7 - This is the "inactive" category that people go into temporarily when they are too sick to have the surgery, if they travel further than 4 hours away, or is something else makes it so they are temporarily unable to accept a heart.
In levels 1 and 2 UNOS considers organs within 500 miles from your listing hospital, while in the other levels they consider organs within 250 mile. If you want info from UNOS about how this works, a good link is https://transplantliving.org/organ-facts/heart/heart-faq/
I signed up for a few research studies working on ways to transport hearts that is approved in other countries, and that is actually going to greatly increase the pool of donor hearts for me. I'll be posting about these research studies tomorrow, but as a warning it will have a link to a slightly graphic video and will have information about how they procure the hearts that will go into a fair amount of detail. If you are squeamish or don't want to know that much, I would suggest foregoing tomorrow's post.
BACKGROUND
As many of you know, Jodie was born with congenital heart defects and had surgery at 10 days and 18 months old. She did ok throughout childhood, but had to be on some medications through high school, then another was added in college. Jodie went on to grad school, and unexpectedly required a valve replacement in 2007. It turned out she was in the early stages of heart failure, but only found out after the procedure. She needed to get a pacemaker since her heart stopped beating on its own, and then a few months later upgraded to a pacemaker/ defibrillator due to low heart function. In 2008, Jodie was told that she would eventually need a heart transplant, and that the doctor predicted it to be necessary within the next 5 years.
In the 12+ years since then, Jodie was upgraded to a bi-ventricular pacemaker/defibrillator which helped her feel better but didn't improve her numbers, had it replaced two more times due to the battery almost running out (normal process), was put on a new medication that helped her feel much better but still didn't improve the numbers. Then in April of 2019 things started to get interesting. Jodie went into an atrial flutter and after 3 weeks, had to be cardioverted (think being shocked with paddles, but more controlled and while under anesthesia) to get her rhythm back to normal. Then over the summer she started feeling more and more tired, and having slightly worse symptoms. Jodie had some tests in August that showed things were worse, and the doctor told us in October that we would need to check back in early 2020 to see how things are. After having those tests, its clear that Jodie needs to have a heart transplant.
WHY DID WE START THIS BLOG?
Jodie and Peter decided to keep this blog for a few reasons. First, as a way to keep our friends and family up to date. Second, as a way to share how we are doing and what we are going through (and potentially what we need). Third, as a way to document this journey.
We have learned that we want the people around us, and those who care about us, to know what is going on, but don't always have the energy to talk about it over and over. We will be sharing was is "on our hearts" as we go through this journey. We welcome you to check in as often as you like. Thoughts and prayers are much appreciated. You are always welcome to reach out individually, but please feel free to leave comments on our posts and we will try to respond to everyone when we can. We are also planning to use this platform to share news when we don't have time or energy to send to everyone.
Some of our posts may be more emotional, and some may be about more mundane things. Once we get to step 4, it could take anywhere between 1 day and a year or more to reach step 5. We have no way to know. As we are in that waiting period, we do know that one of the things that will be helpful to us will be to keep busy - board game nights, movies, etc. If you are nearby, please do reach out. While Jodie can't be doing anything too strenuous right now, we still want to connect with people. If things come up that we need or could use help on, we may post it here, or reach out specifically to those who have let us know they want to help.
Thank you for walking with us through this journey as we share what is on our hearts. Please check back for updates. We will add information as it becomes available and as we go through the process ahead.
God bless,
Jodie & Peter Elliott
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One month post transplant!
Wow. It is almost unbelievable that it has been one month since the transplant. So much has happened, with two weeks in the hospital, and ...
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