Yesterday on one of our walks with Stella (I'm getting down the driveway and about half a block and able to turn back), we saw our neighbors. I sat on my "chariot" in their driveway while they were over 6 feet away on their lawn, and it was nice to catch up. Our across the street neighbor was asking if things felt different, and if I could tell it was a different heart. My immediate answer was yes. She asked how I knew, and I shared that the one night in the ICU, all of a sudden it just felt really weird. I was laying there, and it felt like raindrops were hitting me on this one point in my chest. I put my hand on my chest and there was no rain, but it was this strong, steady beat. It was the first time I think it really hit me that this was my new heart beating. Very surreal and cool and bizarre and so many other things.
On my second full day home, I have been trying to find a little bit of a rhythm on which to base my days off of. Peter is able to work from home, which is great, but he needs some good chunks of time to do it. Luckily, with my need for naps and being able to be mostly mobile on my own, we can make it work. He does have the flexibility to say he needs to take time off, but I think if we can manage it then it makes sense to try.
A lot of my schedule is really based around when I'm taking medications. I'm on 19 different medications right now, and have 4 main medication times - 9am, 1pm, 5pm, and 9pm. However, because of the need for some pain meds I also have 7am, 11am, 3pm, 7pm pill times for a little tylenol and one of the nerve pain meds. So my goal is to be up and moving by 7am for my first tylenol dose, and then I have all the other pill times as alarms in my phone. I have it set 15 minutes before I need to take them.
Duke sent me home with a HUGE pill box that has everything for one time frame together in a section. While I understand why they do that, it also makes me uncomfortable to just take a huge bunch of pills without knowing what is what and verifying it is right. So what I have been doing is, at each pill time, taking out the pills, then going through my med list and the pill bottles to 1) confirm that I have the exact right pills and 2) start to learn which pills are which. The 15 minutes gives me time to get up and over to the table, do my breathing exercise (I have a little machine I'm supposed to use 10xs a day to help strengthen my lungs), and review all the pills, then take them by the right time. It's only day two and I'm already about to identify at least 75% of the pills. All the anti-rejection ones I know by sight already, and there are a few I was on before I already know, but I'm still learning some of the ones that I only do once a day. My understanding is that over time some of these medications I will not need, but there are many I will need for my whole life. For now I'm sticking with the box as they gave it to me, but I know that some time soon I'm going to come up with a different pill box/strategy that gets me what I need while also having me feel confident that I know exactly what I am taking.
I also have to keep a log with weighing myself, my blood pressure and my pulse in the morning, and then my temperature, blood pressure, and pulse at night. We are just keeping everything together in one place on the dining room table (which, as I'm feeling better will move to a less central place), but that way it is reminding me of what to do and when. They printed me out a multipage sheet of each of the medications and when to take them, and right now that is my best friend for double checking things.
Peter let me register his fitbit to my phone so we can keep count of my steps and make sure I'm walking enough/not too much. So far today I did a walk by myself around the yard with Stella overseeing while Peter went to get groceries, and we did a short walk down the block. I'm at a little over half a mile so far, and we plan to take another walk in a little bit.
One of the hardest things for me is that the medications and steriods are making me retain a lot of water (like 25+lbs more than pre-surgery), which is being held mostly in my feet, legs, and belly. When my feet get really tight, we've learned the best thing to do is to go for a walk, then have me prop up my feet to help the swelling go down. I'm hoping that with the medications and me going back to my low-sodium diet now that I'm home and can do that (and still enjoy my food), that the water will get down somewhat quickly. I'm learning I can only drink so much so often, but overall its not too bad.
Right now we are praying for perseverance. We are doing better about being patient, but right now we really are needing to be able to push through and go with what is happening. We got lucky today in that the grocery store had everything we needed for me to comfortably be able to eat in a way that will help me heal and meet my protein needs. That may not easily be the case every time, and we are going to need to be able to be persistant and persevere.
I am happy to get calls and texts, although given my napping 1-2 times a day I can't promise that I will answer right away. Peter and I are working on figuring out some ways to do virtual gaming, and we think we at least have a way to play Settlers of Catan with folks online if anyone is hankering for board games. My cousin and I are doing a book club type thing, and if anyone else is interested in doing something like that with me I'm open to the idea as I have a lot of time on my hands right now.
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