*** Quick aside. A few people have mentioned they they tried to call the hospital to check on me or try to send me flowers or something. Since I'm an employee, it is standard practice for me to be "unlisted" so that my co-workers and patients can't just call and ask about me. There is a password, but we have only given it to immediate family as it also gives access to my medical information. So if you try to call and they say I'm not a patient, don't worry - they have to do that. I do have my phone again so if you have a question about something me or Peter can try to answer. ***
It has been an interesting time to be in the hospital to say the least. I pretty much am not even turning on the TV, as it is non-stop Covid-19 coverage. I feel like I know enough to be a little scared.
I'm angry that our country did not respond appropriately months ago when they first started to hear about Covid (and I used to study infectious disease, I can say this with confidence). I'm trying not to listen too hard to the stories coming out of Italy, but what I know does make me wonder. What happens when we run out of hospital beds? I am at the point where I need dopamine, a really serious medicine, to keep my heart working. I have to be in the hospital to get it. What if too many people get sick - do I get to keep my bed, or do I get sent home? Lets say they do find me a heart, but its in a few weeks - will there be a ventilator to keep me alive during the surgery and afterwards? Will there be enough providers available to keep an eye on me? Will it be safe to continue to have to return for weekly check-ups? However, if I don't get the transplant, am I strong enough to keep this up?
This is why I'm really hoping that people stay home. I know it sucks. Trust me, being in a hospital room in isolation sucks more.
I really do wonder how things are going to change after this - I think unfortunately we are going to see just how vulnerable financially (amongst other things) so many in our country are.
Right now, my job is is to try to stay healthy as they find me a heart. I'm doing my part. Please do your part by staying home. Even if you aren't in a high risk group or don't feel sick, you could still be infected and carry the virus, spreading it. Please help flatten the curve.
What does Covid-19 mean for transplant? That is a question my doctors are pondering. As of right now they know that it is prevalent, but are unsure how to put that into the equation. If a heart becomes available, do we get information on the covid status oof the donor? Chances are no one will have beeen tested given the current shortage of tests. Duke is going to continue transplant operations as they feel like heart disease issues will most likely be serious enough to chance that risk. It's a hard call to make, and I can see both sides. My surgeon came to visit today and said that in some ways, my experience last week helped them to actually see how some of things they have been talking about with Covid played out. The are going to continue to transplant, although other places have stopped. Luckily, we are more geographically isolated here than in other places, without a strong public transportation system, so even though NC is at the same day as some of the other states it has not gotten as bad as quickly, and they are hoping the curve will be flatter. So the tranplant team is re-evaluating the situation every 4 hours. They are trying to figure out what the "tipping point" is where you have just as much or more risk of getting Covid from being in the hospital versus being in the community. They aren't sure when, or if we will reach that point here. There are a few potential options of things to do if we needed to, like implant a left ventricular assist device (LVAD), kind of like an artificial heart, if it looked like transplant is going to be put on hold for awhile. Luckily, while I need a heart I'm not so sick that I'm needing to be in the ICU.
Personally, I'm hoping they find a heart really soon - right now things are ok, so I'm hoping if it happens soon then I can get through the worst of it before going home. Of course, if things get overrun later after I'm home that doesn't really work well in terms of the needed after care. There are just so, so many unknowns that it is a bit scary. I'm trying not to judge the experience in NYC, Seattle, etc with here just yet, as we are really different geographically. I just hope people stay home and don't congregrate and that it passes around less slowly in the Triangle region.
God Bless and Stay Home,
Jodie and Peter
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 ...
We are doing our part, staying home. I cancelled my Birthday party with my kids and had a quiet day with my husband. We had a picnic in the car watching airplanes land and take off at our little local airport. We are taking this to 💗. I do work as a primary care nurse but mostly I do my embedded care coordinator work Every time I come home I put my scrubs in the washer and take a shower! I really don’t understand why some people are too selfish to follow the recommendations. Staying home and being still for a while is a lost art it seems.
ReplyDeletePlease know that during this extraordinarily stressful time for the entire world, and even more so for you, that you are both in my thoughts much of the time. I too hope a heart is found for Jodie soon. You are strong, you are in the best place you can be right now and you are greatly loved by many. Aunt Elaine
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