I feel like the overarching question that has been coming to my mind, is what happens down the line? There are just so, so many unknowns.
Talking to my doctor today, they are still doing transplants. Part of the issue is whether the donor hospitals are. Did you know that transplant is an "elective" surgery, and most hospitals are decreasing those to keep supplies up. So part of what matters is if the hospital the donor is at is even bothering to do the donor side surgery. Offers for all hearts have been much lower this week than normal.
So then what happens if they do find one. I get the surgery, I'm in the ICU for a few days, I'm in the hospital for at least 1-2 weeks, then what? It sounds like they have a plan so far to keep clinics running on an as needed basis, but what if things gets worse?
I'm really not being alarmist, I'm just being realistic. And that is not even taking into account that in a few weeks personal protective equipment, or PPE, (mask, gowns, gloves, etc) may not be available, which would greatly increase the risk of infection with anything going around.
It feels really helpless here in the hospital. I've considered if I should have Peter bring my sewing machine so I can start making some of the CDC compliant fabric masks to eventually donate, as places in Illinois and Washington are asking due to the dire shortage. I recognize that is a bit crazy, but it also feels like I want to do something. I don't know that it will get that bad here at Duke, but it could.
I am trying to stay positive. I am praying and trusting that what is supposed to happen is happening. But it is hard. The book I was reading, while really good, is about the Nordic model and I had to stop a third of the way through because it was too depressing to see how poor of a safety net our country has in comparison. So looking into a new book.
I just hope you all are staying home and practicing real social distancing. Even if you are healthy, even if you are a low risk group or kids, that does not mean you have not been exposed to or are carrying the virus. You could not even get sick and pass it along to others. The more it gets passed on to, the more overall who will get sick, and that is why the curve stays steep. I imagine this must suck and you're feeling restless. I get it - I'm stuck in a hospital room. But there are so many things you can do without going to someone's house or being close to them. If you feel like you have to meet up, be outside and stay 6 feet away from each other - and only if you are not symptomatic at all. Wash your hands really well. The more we do now, the sooner it will get back to normal. If we don't do it now, the period of isolation will just push out and out. It is not about if you are worried about getting sick or figure you will catch it - you're helping to protect those of us who can't take that chance.
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 ...
Oh Jodie,
ReplyDeleteUncharted territory is scary and worrisome. I can encourage you by letting you know what our hospitals in Nashua NH are doing. Their protocol changes daily but has finally come to this for triage: people with symptoms of this virus that are manageable at home do not come into the building and are not being tested. This is a change from testing Most people with symptoms or exposure. The reason for this change is to protect the nurses and Drs. And hold on to their equipment like masks etc longer. I believe that more supplies will be made available especially now that more companies are making them. That order was given yesterday. Too late in my eyes but thanks to the governors doing an amazing job that order was finally given. Another piece of good news is that they know that a certain drug previously used to treat malaria and Ebola has shown to be effective but can’t be given for safety reasons to the public yet. Yesterday the government placed a huge order and is speeding up production on this medicine so that when approved it will be available to Patients. That is proactive and positive.
As you are very open and honest in this blog I will follow your example. I had thought about the donor heart as well. Is it safe and able to be harvested. That is very hard to think about but has to be considered. The good news once again is that you have a terrific transplant team making decisions with you! If the decision is to use the other option then you can trust that it was made with very careful consideration and your best interest in mind. It is important to be realistic that is being prepared! God was my constant companion when I was faced with the illness of my late husband. I have witnessed him at work and felt his unwavering love .I am convinced beyond any doubt that he knows best and will let it be so. Continue to put your full trust in him and let him carry you! Continue to deepen your relationship with him. I tell him about you and Peter numerous times a day.
These are times that I thought we would never see. This is a huge challenge to all humanity and effects every single one of us. I’m grateful for the knowledge of the experts that are leading us all through this. Jodie we are all in this together, let’s continue to be grateful for what we do have and pray for continued guidance. 💗
Dearest Jodie,
ReplyDeleteI too am very concerned for you, Peter, and the world community. But I also have faith that we will get through this. Here in Illinois we are on the Governor's stay at home order and I hope that more states will follow suit soon. You are doing your part by staying safe in the hospital, as the rest of us do our part to stay at home if we are not required to work, as Uncle Brad is. I think we are on the path of flattening the curve.
Much love,
Aunt Elaine
XOXO
Thanks to Uli, your words have comforted me, keep safe.