So I left us on Friday morning.
Friday morning - I was starting to feel better, and as we got off the fluid I was able to decrease my supplemental oxygen, which was exciting. Peter was not allowed to come to the hospital to give me my cell phone, but had emailed a list of numbers to my coworker who then "faxed" it to me. I got the ok to be given things, just not from Peter (as he had been around me and I was not negative yet). We also got word that the state lab was overwhelmed and could not test my sample, so it got sent to another lab. My wonderful coworkers went to the gift shop and got me a book of sudoku, wordsearch, and puzzles, plus some kind notes, markers, and a journal. This really helped pass the time, as I'm not really much of a tv watcher. I had some phone conversations, but talking was still a little tiring. While I understood why I can't see Peter or Dad and Lupe, it was still really hard. The staff was really nice, but its weird to only have contact with people in full protective gear.
Saturday I felt much more like myself. The doctors came and said that they really have no suspicion at this point that I ever had Covid, but until we get the negative result they can't let me off isolation. I was starting to get frustrated at this point, because while I'm here in isolatin I can't get a heart. I am grateful that it was somewhat more peacfull, I got rest, and at least I know Im healthy. Mid day they tell me my lab result is "processing", so I'm hoping that means we will know today. In some ways I'm on edge all day. Luckily, I had an awesome nurse who looked over my chart and worked with me to think about what I need to do to be as healthy as possible. She showed me how to use a piece of equipment they had given me in the CTICU but had not given me parameters on. She gave me a ton more independence and started letting me unhook myself from the heart monitor, oxygen monitor, and bp cuff on my own so I could just go to the bathroom instead of having to call someone every time. By the evening it had said processing awhile. Finally, I got a "presumptive negative" result. They opened the isolation and said Peter could come, so i called him and told him to come over right away. He arrived 30 minutes later, and there was some confusion and they made him gown up. He walked in, and we just hugged and held our foreheads together. It felt so good to get a hug, and to be there with him. My nurse came in and seemed upset and said that because of the type of result, they were maybe putting me back into isolation. Up until this point I have been really patient, but that pissed me off. I called my heart transplant cardiologist on his cell phone and told him what was going on, and he said he would look into it. Peter and I just sat and held hands, and it was really, really comforting. Eventually, we found out that what happened was that the state lab sent my test to another lab to complete, and they used a non-FDA approved test so weren't sure if they could accept that. Infectious disease reviewed my case, and gave me the all clear. Peter was able to take off the gown and gloves and mask, and we just sat and talked and caught up more. We read some Harry Potter to each other, and then both headed to sleep. It felt so different to have him in the room.
Sunday morning I sent Peter to ortho urgent care, as he was limping and had badly twisted his ankle the other day. While he was there, Dad and lupe came to visit and we just sat and talked. They went to lunch, and Peter came back over. we waited for awhile, and after hours they finally got me to a cardiac floor. I had asked my cardiologist if I could actually take a shower, and he said yes! peter helped me when we got to the room, and it really wore me out. Totally worth it to feel clean - I still had some of the dyes and stuff from Monday on me. I also was able to wash my hair. I've been impressed with the short hair and how it has held up for 7 days with no attention, but it was time for a wash. Dad and Lupe came for a short visit and so Lupe could say goodbye. They changed the visitor policy to one person per visitor, we thought per day, starting in the morning, so we decided Peter would get a full work day and dad could come stay with me.
Overnight I got 6.5 hours of uninteruppted sleep, which was so needed. Today, Monday, has been a full day. Dad I played some card/board games, talked, etc. It seems like I have the energy to have breakfast, putz around the room a little, do a few laps around the hallway (in total), but not much eelse. Moving around some pillows and bedding really wore me out.
I'm appreciating folks reaching out, but may or may not have a ton of energy for responding. I'm doing well, and just starting to recognize that this will be more of a new rhythm for me.
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 ...
Praying for a wonderful, healthy new heart !
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