I went in today for my first once a month check-up. We got there at the right time, but for some reason it took a while to get in. The person at screening in the hospital lobby took a while to find me in the system, and then the person who checked me in at the clinic took some time too. Despite everyone being required to put on a mask when they came in, there were still a shocking number of people not really wearing them. Even at the check-in point, a man put on a mask, then kept pulling it down to talk to the staff, and no one said anything to him about it. Then as I'm checking into clinic, the person in front of us has someone with them who has a mask underneath her nose. We sat down where there wern't a lot of people, but looking over into the corner, two other people have pulled off there masks and are playing on their phones. In the cardiology clinic waiting room. What is wrong with people?
I'm not going to lie, I was both pissed off and scared. Covid infections are the highest they have been ever in our state, there are more people in the hospital than I've seen thus far, and people are just ignoring the one thing that has been shown to slow down infection. In a clinic where people who are high risk are going to be. And not one staff person went and said something to anyone that we saw (not that I expect them to), but it was really hard to stay calm.
I got called back for my lab work. Since the lab area is so small, Peter went to the nurses and let them know I was there, then he was put in the room for me to wait instead of in the hall. Almost like we have this down to a science. I got to the room, the nurse did her check, and I took more morning pills, Then we waited for a bit until the doctors came in. We had a resident (soon to be fellow) and a current fellow (soon to be attending) come in. For those of you not familiar with these terms, medical students graduate and become residents, where they work and apprentice in hospitals in a specific area. They pick a specialty, but still have to rotate to different areas. During residency they pick their specialty, and for most of them they then get a fellowship for after they graduate, to learn more in depth but with more responsibility. After that comes being a attending, which is a full doctor. The fellow was one of the doctors that was in patient after my transplant and this is the first time I saw him in clinic. I introduced him to Peter, and the fellow lamented about how unfair it was that Peter wasn't allowed to be in the hospital with me. This is one of the doctors who would just check in and see how I was emotionally, and recognized that things sucked and it wasn't fair. I appreciated it.
I updated them on the blood pressure and cardiac rehab issues. Yesterday at rehab, my bp was a little better after med changes, but still got way too high when I actually pushed myself. We went through all of that, and then I signed the consent for the biopsy. They took me back right away, and the nurse had one some mid 90's music - old school Mariah Carey, Boys II Men, and All For One. The only problem was it kept stopping due to the wifi having issues. Its nice to have background music to focus on during biopsies. The nurse got me prepped, the Echo sonographer got some pictures started, adn then the resident and fellow came in the room. They gave me numbing medicine in my neck and got the tube into it. This is not a pleasant process, and I ended up asking for more numbing medicine as it still hurt. The attending came in, and then the fellow instructed the resident on how to do the bipsy - which is three pieces. I couldn't really feel anything most of the time because of the numbing, but as most of the time the background music was off, it was a little disconcerting to hear them talking about everything so technically. It took a little longer than normal, but finished off. I still really don't like the neck biopsies, but they are in a lot of ways easier than going to cath lab, at least in terms of timing.
We waited a bit and the attending came in, and they adjusted my meds a little bit. They still don't want me to take the diuretic every day, but I am allowed to take more if I feel like I need it, which is good. The doctor assured me that they don't think that my heart will normally have high blood pressure is because of one of the anti-rejection medications, which over time my dose will come down.
On the way home we put in a Panera curbside pick up order, and stopped to get a Target order picked up curbside too (needed more cat litter). That was easy enough as they came right now and put it in the back of the car, and then when we got the food they brought it right out. I had lunch and then decided to lie down, which turned into a 3 hour nap.
Waking up, my neck still hurt, so I decided to just take it easy. The rest of the evening as been lying on the couch, reading, making and have soup for dinner, and I'm heading to bed early. I'm hoping that I'll feel better tomorrow and can get in a productive day. I have clearance to actually do a little more exercise - slow walking daily, plus twice a week adding in 20 minutes of actually working out on the exercise bike. So I'm going to start working that into my schedule. I was also given the ok that I can move my morning med time a little earlier, so hopefully I can actually get started in my days soooner and be a little more productive.
As I up the exercise, it will be interesting to see how my energy and appetite work with that. I'm still not quite at a set point, although there seems to be a little more stability.
I'll hear tomorrow or Thursday about my biopsy results, hopefully still no signs of rejection, and starting tomorrow I double the new (old) med I'm on. There is one medication I was on prior to transplant they restarted last week, and it seems to have lowered my resting heart rate by about 10bpm, which is good. The doctors decided to double it and see what happens. When I restarted it last week I didn't get any side effects, but when I first started it 13 years ago it was a doozy, and I was really sensitive to the side effects. I'm hoping that since I didn't have much of an effect last week, upping it won't be bad. If it is, I'll have more sleepiness and moodiness to deal with.
The one things that was encouraging is that of all the things we brought up, including my headaches, we got validation that it is unfortunately just part of the process. I wish it was a different message, but at the same time at least the slightly abnormal is "normal" in this case. The attending also did not seem nearly as concerned about me working out as the cardiac rehab folks are, so that was good.
We'll see how things are moving forward. I'm definitely more concerned about infection risks now given that it seems like a lot of people have started letting down their guard. I really, really wish that people would just take wearing their maks seriously. I'm legitimately worried that it will be more than 6 months before I can really go anywhere, and that as time goes on I'm going to have to start missing out on things because of the potential infection risk. Its really hard to see the end in sight with covid, and unfortuntely my faith in people is somewhat low given that we are only as strong as the weakest link, and its clear that a lot of people aren't worried about this (just from what I'm seeing at the hospital, not to mention in the news). Please stay diligent folks.
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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