Another month has passed since transplant. Some things have changed, while others haven't. I can still do much more than when I came home from the hospital, but these things still make me tired. I'm really hoping that getting into a home cardiac rehab routine will help with my stamina and productivity. My chest is not nearly as sore as it was, and I even did some specific chest exercises and was not sore the next day - so that's a win!
My weight is still quite a bit up from before surgery, and I'm told that this will probably be the case for awhile, since I'm on steriods. I'm still not happy with it, but the doctor gave me a little more freedom in controlling my diuretic, so at least now I'm on a dose that I feel like keeps me dry enough that I'm not getting the painful skin stretching from holding so much fluid, but not so much that the team things its bad.
I still have a lot of medications that I'm taking, but a number has fallen away. As doses have changed, most of the pills I've been able to get in a single dose versus taking multiple of the same medication in a smaller dose.
My mood has been a little better too, as I'm not as irritable unless I'm tired. I still need a lot of sleep, but thats ok. Some days I don't need a nap, others I really do. I'm getting a little better at accepting this.
In terms of my mind, I feel like some of the fog is finally lifting. I don't know if there is any science behind it, but after my last open heart surgery I feel like it took some time for my mind to really come back. I could still think, but it wasn't as clearly and higher level functioning wasn't as easy. Focus on certain things is still hard to sustain, but in other areas it is becoming easier.
It feels good to be doing therapy again, even if I only have taken two of my patients back so far. I have one more I've reached out to, and as I start feeling better and looking forward to having that structure. Granted, I only feel like I can realiably seen one a day at this point, but as my stamina gets better that should too.
I definitely underestimated how long healing while immunosuppressed takes. Part of me thought that I would be almost 100% back to normal by now. I think part of me not being further along is due to covid, which has meant I'm stuck inside and not moving as much as I would have been if I could go out places. But most likely, I just was overly optimistic. I'm really grateful that Peter can be home working.
We are trying our best to vary our menu each week. We get tired of certain things, and have been looking for easy things to make (that are low sodium) and we can cook from mostly frozen ingredients. We unfortunately keep forgetting to take out meat to defrost for the next day, which doesn't work great. We did discover that Panera has a deal on Tuesdays where you can get a bakers dozen bagels for the price of a half dozen. We did that two weeks in a row, but took a break this week as we are a little bageled out. But we made yummy pizza bagels, bagel sandwiches, as well as just bagels and cream cheese.
Yesterday was my first at home exercise, followed by lots of hunger and eating, then a telehealth session with a client. After that I was so tired I needed a 2+ hour nap. Today I've been moving more slowly. I'm listening to my body, and will do my 20 minute walk tomorrow. I figure this week my goal is to do at least 2 full workouts (one is done) and at least 3-4 days with a walk and strength training, By two weeks from now I want to be doing the full workouts 3 times a week and walking/strength training the rest of the days. One of my good friends is also trying to be more actice, and we are being accountability partners for each other. I suppose by putting the info on here it will also help hold me accountable.
I've been impressed with some of the new research articles coming out that show the effectiveness of masks. One study found that wearing a mask may protect you up to 65%, and obviously it protects others from you (if you were infectious and didn't know it). I'm really hoping that the tide will turn and many more people start wearing masks - if everyone did, infection rates would drop low enough that in 8 weeks it would not be too bad. Until then, I'm on house arrest minus being outdoors without others around. I'd really love this not to be the case, and wish there was more I personally could do. Unfortunately, its not my decision. Please wear your mask and encourage others to do so.
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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