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

Thursday, January 28, 2021

Kidneys and swimming

While my 10 month appointment was good overall, my lab levels for my kidneys continue to be concerning. This time one of the values was double what it looked like 2 months ago, and it was already almost double what it should be. My team told me to drink a lot more water and stop a few meds to make my kidneys happy, and to get labs re-tested in a week. The number went down significantly but is still higher than before and a little more than double the normal amount. I bought a 75oz water bottle, which is HUGE. After a few days, I think its too much water. After sending in a message to my doctors, they said to shoot for 64 oz. Peter and I started looking up foods that make your kidneys happy versus work hard. We are going to plan to incorporate more of the good foods into our meal plan the coming weeks. In a lot of my looking for information, one thing stands out - when you aren't active enough, it can lead to unhappy kidneys. On the labs, I also noticed that my triglycerides were up, which is also linked to not being active/being overweight. I still have 20+ lbs since transplant, and while I've tried some things, not much has stuck like it needs to. 

I started thinking about how, pre-transplant, the one thing that I could always make myself do was swim laps. UNC has a wellness center that is 10 minutes from us with a pool, and you can book lanes for 30 or 45 minutes. If you are doing laps you can have your mask off, but if you are walking in the pool you have to keep it on. Peter and I decided to join, because I need to move more. One of the things stopping me is that my joints hurt due to the extra weight. I think this will be great, because I have to book a time, and if I no show we owe them more money. It is going to be great for accountability. We were hoping to start on Tuesday, but they had to get a medical form from my doctors first. That came in yesterday, so tonight both Peter and I went swimming. We each had to reserve our own lane, and the times were staggered but had some overlap. 

 I swam! I got into the pool with my mask on, did 3 "laps" consisting of going as far as I could before my mask would get wet (2/3 length of the pool or more), then did some standing pushups off the wall, leg lifts like I used to pre-transplant, and then I did a lap (sans mask). I made it to the other side and was pretty out of breath, so waited a little, then got back to the other side. I put my mask back on since I realized that I'm not really in lap shape yet. Instead, I decided to walk in the lane for as long as I could. I did a few walking laps, then did some leg lifts, more push ups, and more walking laps. I decided to try another real lap, and got to the point of where it gets deep. I was getting tired, so decided it was best to turn around. Good thing too, as I ended up walking most of the way back because I was tired. I did some more leg lifts, then one more walking lap before I called it good. In total, I was in the pool for about 20-25 minutes. 

I get my second dose of the covid vaccine tomorrow. I think that is part of what is making me feel more comfortable with the swimming. There are at most another 6 people in the pool area unmasked, but chlorine can kill the virus and the gyms have been doing this awhile without people getting infected at high rates. Since I am not in shape enough for laps yet, this will be great to get in water aerobics and water walking as I build my strength, and I'll be masked while I do it. I'm planning to make 3 appointments a week so I get it in. Hopefully that plus puppy, and walking around the house more when my fitbit buzzes during the day, will help with weight and lab values. My fitbit suggests 250 steps an hour and if I do two "laps" from one end of the house to the other, I can get that in easily.
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