I expected that there would be some things that might be needed after transplant that I would not expect. Turns out that the big thing is compression socks. After surgery, which is in part due to the medications and sterioids, and because I'm retaining so much water, I am very, very swollen. It is mostly in my feet, ankles, and legs, to the point that it does get painful. This means that spend a lot of time with my feet propped up. I've learned that the more I walk, the better it is.
I asked my nurse coordinator if I could wear some compression socks, and she thought that would be ok. I didn't have any, so yesterday I put on some knee high stockings. I looked on the target website, and was able to find 1 pair for pickup and ordered them. Peter went and picked them up 4 hours later, and we of course washed them first. Even with just the knee highs, my feet were feeling better.
Today, now that they are clean, I put on the compression socks (over knee highs, since I only have one pair so far). They are AMAZING. My feet are still swollen, but I can feel my ankles and it does not hurt. When we went for our walk today, it was so much easier and I did a half mile loop. So of course I need more compression socks, because I'm sure this swelling is going to continue to be an issue for awhile and socks are not something you can really re-use every day. The caveat is that since we are in a pandemic, this is not really an "essential" item, so no one has any. None of the other local targets are carrying them, and neither are CVS or Walmart. I was able to order some to be delivered to the house, and they should be here by Friday. I really shouldn't complain as it could be much worse, but I guess I just didn't really think about things like this being hard. Normally I would not call a pair of socks a "need", but in this case it really, really is. It is a small thing, but it makes me nervous about what else might come up. What if there is something that we really need for my recovery, to either make things easier or not hurt or that it just needs to happen, and I can't find/do it?
I feel like I've stayed pretty calm through all of this, and I'm certainly not panicking now. But the reality of recovering from a major surgery while immunocompromised during a pandemic is sinking in more every day. I got a referral for cardiac rehab, which normally I would start about 6 weeks post transplant (which crazy enough is only 3 weeks and a few days away), but I'm not even sure if they are still open.
So at almost 3 weeks post transplant, overall, things are good. I'm home, I'm not having pain and have been able to decrease my pain medications, I'm able to get around mostly by myself, I'm listening to my body and eating/resting when it is telling me to. We are still trying to figure out a routine, as Peter is helping care for me and working. We are doing laundry and dishes daily to be safe, and figuring out what I can help with and what I can't. I think sometimes I have to remind myself that I've only been home 5 full days, and that it is still less than 3 weeks from the transplant. When I take that into perspective, I'm doing great. I think that when I'm feeling good I feel so good that it is hard to remember that, and then things happen that remind me to I need to just give it time. I need to remind myself that we have most of the the things we need, and trust that if a time comes when there is something else that is really important and needed, it will work out.
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 ...
Happy Easter you two! So glad you can enjoy this glorious day together -👫🏻with a new heart ❤️ Cats and puppy 😺😺🐶
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