I had clinic today, and my appointment was the first biopsy of the day scheduled at 8am. It took longer to get into the hospital with the screenings last time, so we decided to get there a little earlier. I finally rolled out of bed a little after 6:30, hopped in the shower (since I have to wait at least 24 hours after biopsy to remove the dressing and shower again), made tea and some breakfast, and then we were out of the house by ten after 7. I had moved my pills over to a portable container for the day. We got to the hospital, parked, and were waiting to get in by 7:40. It went fairly quickly. Checked into clinic, was only sitting a few minutes before they called me for bloodwork, and then it was into a room.
There are a few dedicated transplant nurses, and I really like both of them. The older one checked me in and caught up a little. Blood pressure looked good when it was first taken. The doctor came in, and she is one of my favorites from when I was inpatient. She had reviewed my chart, and we talked about the high blood pressures at cardiac rehab. She very assertively said that my heart is very healthy, that the high blood pressure is because of some of the medications I am on, and that they see people have bps into the 200s when they exercise all the time. She was not concerned in the same way that cardiac rehab was, and once I told her about my infection control concerns, basically said that since I have a treadmill and bike at home, she thinks I would be fine to do it at home. She also looked at my bp meds, and asked why we hadn't increased one in particular (which is one I've asked them about raising before). She got the ok to decrease one of my meds to taking twice a day instead of 3 times a day, and increased dosage of another med too.
The doctor also asked me about the past biopsies and how they were. I was honest that the first one was not pleasant, the second one was not bad because they used a lot of lidocaine, but the last one was not very pleasant again. She said, without me asking, that she would plan to use a bunch of lidocaine. I signed the papers, and then I took a few tylenol and the anxiety med I was given to help make things a little easier.
They took me back, and for the first time it was an all female team (echo tech, doctor, and nurse). We put on some swing music, and as I listened to it I was able to relax and picture being on a dance floor and how I would want to dance to the songs. Getting the lidocaine hurt a little, but it was really not bad when they put in the line. The biopsy went really quickly. Once they removed the line, there was a little trouble getting me to fully clot, but I was calm and was ok with holding the guaze to get back into my room. Once I got back to the exam room, they took my blood pressure, which was ok, and then checked my neck. It was clotted and they put on the dressing. Ten minutes later, they did another bp and it dropped nicely into a healthy range. The doctor came in briefly to give me the after visit summary, then we were on our way. At 9:50am! We have never gotten out before noon before!
I'll get the biopsy results tomorrow. We put in a curbside order for Panera (we discovered last week that on tuesday you can get a bakers dozen bagels for half price), so we have these for breakfast/lunch this coming week, and Peter got a sandwich while I got soup. I had a little something to eat, then laid down for a few hours. After waking up, my neck was still sore, but I'm much more alert and functional than I was the last time.
So I think this new approach to biopsies is going to be good. The doctor told me how much lidocaine she used, and will put it in her note so they can do that next time too. And I am going to use what I have learned at cardiac rehab to come up with an at home plan. I need to decide if I'm willing to go for another session, but even yesterday they had changed things in a way that increases your exposure to other patients, so I'm thinking maybe not. Also, if the actual cardiologists who deal with transplant patients are saying that I am really healthy and should not be holding myself back from walking/biking normal speed, then I trust them more than cardiac rehab. I'm going to talk it over with my nurse coordinator and decide from there.
By the time I was up, had lunch, and feeling more awake, I didn't really have the focus for work. But I think that should get better as time goes on. I think we are definitely going to request the first biopsy of the day if we can though.
I finished my last sewing project, a set of 8 quilted placemats, and Peter is going to mail it in the next day or two. The last project before the placemats was a baby quilt, and we got to do a video chat with our friends opening it and video meet the new baby! He is so adorable. Now I'm starting on a t-shirt quilt for our cousin, to be done before she gets to college in the fall. I have one queen size wedding quilt to make, and need to quilt together the two sides of our king size quilt. I'm sure there will be more projects soon - there is at least one more family baby who will be getting one. I should also finish the masks that I had started months ago and donate them - they are sitting there collecting dust.
So my new approach is going to need more of a set schedule each day. We will see how that goes.
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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