It's been a bit since the last blog. As time is going on, I'm not seeing as big of changes in the day-to-day, or even week-to-week. Coupled with having to be inside all the time, I'm not having as many things happening that are big updates.
Things are still moving along, albeit slowly. Some time last week I think it really hit me just how long this recovery is going to take. I've healed from open heart surgery before, but I have not been immunosuppressed. I was told this would make things take longer, but I don't think I really understood that until last week. One of the main place I'm noticing that is my wounds - I still have scabs from 9 weeks ago where the chest tubes were, and it is only in the last few days that I have felt my sternal incision is really healed all over, even though there are still parts that can heal a little more. I am starting to do more of what I will need to do in my "real life", like be on the computer for longer, video chats, things around the house, and I am really noticing that while I can do a ton more than right after surgery, it definitely comes in spurts and there is a long way to go still.
Last week they decided to discontinue one of my medications, and my steriod dose tapered down the beginning of this week. Unfortunately, I think this may have led to a massive migraine on Monday that kept me in bed pretty much all day. I'm hoping that things even out. I've had a few days with potential side effects from medications, but nothing that lasts multiple days in a row so it is hard to tell. I'm trying to be patient and just dealing with things day by day.
We got the treadmill, and I am being assessed by cardiac rehab next week, so I'm looking forward to starting an exercise program. With my new recognition of my limitations, I am expecting that I will go back to needing more naps as I work to build up strength. It's a good thing that I'm healed enough that it is now safe to do a full shower with water overhead. I'm still being careful of not getting the sternal incision too wet, but its coming along.
I'm keeping busy with reading, doing work, and a little sewing. I'm trying to keep my spirits up by finding new ways to connect with friends, and given some of the new guidelines on what is safe, seeing as we can do more outdoor socially distanced, with mask, meet ups. Not too many, and still only with people who are being careful, but it is nice to physically be able to see a friend. We also downloaded an online boardgame simulator and are getting to know that.
I'm still concerned that I'm not seeing a ton of people in masks around. It also has gotten really hot, into the 90's some days, so its harder to walk outside when its really hot out. Luckily I can use the exercise bike, and with no resistance I usually just pedal for 10 minutes, which is about 2.5 miles. I'm really hoping that folks are smart as states re-open and realize that we still need to socially distance and wear masks.
The news about the injustice going on regarding the killing of an unarmed black man in Minnesota, and seeing how peaceful protests were met with tear gas and rubber bullets while angry white people were allowed to have armed protests with no resistance, has been a stark reminder that racism is thriving systemically. We already were seeing that in some of the health disparities with covid, and I struggle with how to be an ally and help contribute to an anti-racist world. There have been some good books recommended, and I am going to look into delving deeper into this. I truly believe that it is going to take those of us who have white privelege speaking up, calling out these acts as wrong, and working with people of color (and taking their lead on what is needed) to really make lasting change. I feel blessed to be part of a faith community who feels the same, and who is willing to call out injustice and stand up for what is right, even when it is unpopular or hard.
I hope you all are able to find some hope and happiness in these times. Don't worry if you don't get an update, as this may turn into more of an every week/every other week thing unless more things start happening that are worth updates. At some point when I'm more towards healed and 'back to normal' this may shift, but for now know that if you don't hear anything, I'm most likely moving along slow and steady-ish. I'm still not feeling as motivated right how to reach out to others given all that is going on and trying to get back into things, but I am always up for hearing from folks. It may just take me a little while to get back to you.
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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