On Monday morning, I had a specific place in mind where I was going to get a breakfast taco for Amanda. In Texas, we have Stripes, a gas station that fixes tacos. Nothing special, but they make their own flour tortillas and make them and your taco to order. 7-Eleven bought them out, and I noticed they had a one with the Texas taco spot addition, a little ways from the apartment. I left early, probably around 6:30, to grab Amanda a taco. I quit eating breakfast since I’m not losing any hospital fluff! The traffic was atrocious, even so early, with lots of stop lights. As I was checking out with a taco in hand, Amanda texted that they were getting her for dialysis. I almost squeezed the guts out of the taco. I’d left the earliest yet fought with the traffic, then she wouldn’t even be back for 4 hours! I just drove back to the apartment to get a few things done. Surprisingly, I didn’t eat the taco; if it had been my regular, I would have needed an emotional support bite! I did get some things done at the apartment, though. I’m converting the guest bedroom closet into a pantry/utility closet, as the washer and dryer occupies the space where our Houston apartment had a utility closet.
I left a little before Amanda would be back. I had a few things to do. One of which was to go to the chiropractor. He even exclaimed how bad my back was when he barely pushed, and it sounded like a Rice Crispies commercial from my childhood. My back was killing me after bad lifting posture getting Amanda up. The new method is great. Amanda wants me only to get her up now because the way is less painful than pulling her up, buy the armpits. She grabs around my neck, and I around her torso while squatted, then simply stand up. Watching me get her up, one of the care partners said the other day, ‘Wow, that was easy.’ Yes, and a lot better on my back! I just can’t stand fully with my legs locked; otherwise, it pulls Amanda’s sternum too much. One time, I heard a few pops in a row rapidly, I thought Oh no, I ripped her sternum open, but I had stepped on her EKG leads, and they popped off! The following day, the next pops we heard were my bad shoulder, right about ear level, for Amanda. My bad knee doesn’t pop when squatting, it just crackles. Lord, we’re a mess!
The team rounded while Amanda was in dialysis, so I missed it. The NP said he’d come back once I was in to go over the things I appreciated, and Amanda wanted me to hear them too. She is just having a hard time remembering and just isn’t her usual sharp self. The biggest takeaway was that they’ll start a blood thinner. With all the upper extremity and breast swelling, the risks outweigh the benefits.
She was feeling bad and weak after dialysis. I still got her up to walk a while after she was back and rested. She doesn’t push it too far, but she knows her body, pushing it just enough. The mental aspect of this is so new to us. She knows she can’t remember well and is slow to talk or think, which is frustrating for both her and me. The constant nausea is also new and frustrating.
Monday night, after I’d hollered enough and told everyone multiple times about the lymph drainage increasing, IR finally came to see up. They planned to map the lymphatic system to locate the leak and embolize it. The news was good to hear, versus the “well, let’s wait and see how it goes” mentality we’d been getting. I left not long after the late IR visit. On the way home, I noticed a significant increase in kids walking about; school was definitely back in session. Mostly freshmen, I assumed, by the deer-in-the-headlights look, combined with their frequent visits to ice cream shops and the like, compared to bars, as the older college crowd usually frequents.
We’ve been binging The Golden Girls for a few seasons, but Tuesday morning, Amanda grew tired of it. The show cracks me up. I could have continued watching it, but it had run its course for her. Amanda was searching for cooking shows, and I said Hey, if that’s what you want to watch, I have some shows on my radar. I typically hate cooking shows, and Amanda doesn’t like watching them with me. I’m bad about correcting or criticizing them on everything, and it drives Amanda crazy. What I do like is traveling shows combined with cooking. A new one I had my eye on had the characters Merry and Pippin from The Lord of the Rings. The two have stayed friends after filming the movies years ago and are goofballs, much like their characters. They travel around trying various foods. We ended up starting the season on the last episode somehow. They were in Switzerland, the very top of my travel list. They were riding ski lifts and gondolas, not to ski, but to eat cheese above 10,000 feet in the mountains. So the show was right up my alley, and I was glued to watching it!
Work has been a stressful thing for me lately. I initially requested a 60-day leave from July 1. I was given a 30-day leave and told to ask at the end of the 30 days, and they would consider an extension. I don’t know why they just didn’t give me what I requested. I had to request the extension a week before I was to mark up from the 30 days. I contacted my manager two weeks before. He had to wait for his boss to get back to him. So I impatiently had to wait over the weekend before reaching back out.
It’s been a tough recovery. I was talking with some friends about things last night. The NP asked us if anybody had warned us how complicated redo transplants can be. Dr. McChicken, for those of you joining us late, his name is Menachem, but I dubbed him the after the sandwich, and it stuck. He talked about how Amanda could be left worse off. She’s not worse; we’ve just been riddled with complications, but no one really mentioned how there could be so many complications with a redo. We were not prepared for this in any way, neither mentally nor financially. I suppose we just had it easy with all the other surgeries. She did have five other open chest surgeries, including the one via the ribs. I guess we were just fortunate that we didn’t have any complications with all of those, which is how the NP came across. At least we’re in the best spot for all the complications, and in typical Amanda unicorn fashion, she pulled all the stops out at once! It’s good to be here; if not the premier heart transplant hospitals, the most experienced one. But not good for my own heart to have been continuously riding this roller coaster of medical hell!
I’d been working all day getting things lined up for the insurance. My coverage will be dropped at the end of the month, and I’ll need to pay for COBRA coverage to keep it going. I was ready for that, but I wasn’t ready for other things that popped up. We max out our medical flexible spending account every year. It’s a use-it-or-lose-it type of program, but it’s a no-brainer for us. We don’t pay tax on that portion, and on January 1, the entire balance is available, even though it’s deducted from each check. So it’s an interest-free medical loan of sorts, too. With all we have going on, there’s never a loss, and most years we max it out by March or April.
I have my Joint Chiropractor monthly payment on the FSA card, but it didn’t go through. I knew the issue; I hadn’t worked, thus I hadn’t paid the premium, so they shut it off. This year, everything happened so quickly, and Amanda has been inpatient so much that we’ve not had enough copays on doc visits or meds, so we have a couple of grand left in the account. Long story short, I wasn’t thinking about those extra few hundred dollars or my life insurance premium each month. Also, the quote they provided for the COBRA coverage ended up being double because the representative I spoke with didn’t include dependents in the amount she quoted. Plus, I had my name blasted on Facebook for a storage unit I’d forgotten we even had, which was up for auction! The property had been sold, and the new owners didn’t have our contact info, so they put up our unit and many others up for auction for two months of late rental fees. I had probably 6 or 8 people contacting me about it being up for auction! I got it taken care of, but still crap I didn’t want to take care of. Needless to say, without me working, it’s about to get expensive, not even counting the lost wages. The Lord provides though, there’s a Nashville foundation for LVAD and transplant patients that will help us with some of the cost of the COBRA insurance next month.
After dealing with the insurance junk, I needed some emotional support food. I’d done a differential on myself the other day with Bev. I’m having chest pain, and I think it’s my GERD back with all the crappy food I’ve been eating, although stress makes it flare up too. She thought so too and gave me a few bakeries to try to go back to my emotional support donuts versus Nashville hot chicken, which is likely the heartburn culprit! I stopped by a bakery and got some donuts the other day, but they were meh. Tuesday night, I got some from another bakery that had OK yeast donuts, but the 100-layer cronut or croissant/donut combo was one of the best donuts I’ve ever had. Nashville is not good for my waistline, friends. I told Bev about my trying of her recommendations, and she said she almost thought I needed an emotional support food blog, too!
On Wednesday, the first call I received was not long after I got to the room with Amanda. It was my manager. They approved the 60-day extension to my leave. Upper management was more sympathetic to things than my superintendent. It seemed my manager’s director happened to be in Omaha this week and was able to rally for me. They were all just worried about the insurance, wondering if I needed to come back to work to keep it going. I really didn’t know they’d let me do that again, but I guess the upper manager was ok with it. I can’t leave right now with everything going on. With Amanda’s cognitive issues, I really have to be here. It’s too hard for someone who doesn’t know her history to advocate for her, and she’s having a hard time remembering things correctly. When I mentioned leaving, Amanda got anxious immediately, too. We’re not there yet, for me to leave, but it’s good to know Omaha will work with me.
The team came in, and I asked a question about how the idea was that in IR, they’d fix the leak. The cardiologist had to jump in to correct me that it was a diagnostic test and they wouldn’t be fixing anything. I had to correct him and say that IR said they’d fix it if they could, hence I prefaced my statement with “the idea.” He was just looking for something to correct. He’s likely a horrible teacher for the fellows with an attitude like that. The only reason I didn’t bear down was that I figured he’d be the discharge doctor, and I didn’t want to hurt our chances of getting out because I started someting with him.
They took Amanda to IR for the procedure late morning, and I left for the post office. I needed to mail the COBRA insurance payment off expedited so it would get there before the weekend. I’m being proactive because I don’t want issues with admission to the rehab hospital since my insurance terminates on the 31st. I’m still worried the payment won’t get processed soon enough, and we’ll end up with issues. I just don’t understand how, in 2025, I couldn’t make an online or even an over-the-phone payment for that. On my way back, I popped into the cleaners to talk with the guy there. I didn’t have any clothes to drop off or pick up, but I just wanted to chat with him. He asked about Amanda, and I gave an update. He told me he can’t wait for the day I bring her in to meet him. I received a big hug and a “love you, brother” before I left.
I stopped at Hopdoddy on the way back to the hospital to chat with Brett. After I was there a bit, I got a pic from Beverly in a group chat with Amanda and her. It was a picture of her solo in our room. I didn’t notice it right away and called her when I did. She was already in the car, so I told her to swing by Hop if she could. So, she stopped in and chatted for a bit with Brett and me.
I got back to the room and waited for Amanda to get back. When she did, the wound vac would not stop beeping. I was able to fix things in the morning by fiddling with it and lining things up better, or connecting and disconnecting. None of that worked after she was back, and I was ready to throw the vac out the window. The NP came in and pressed on it, waking Amanda up. She had been in a deep sleep after all the sedation. I’m not sure if it was the beeping or the sedation, but once she woke, she was feeling horrible, whining and whimpering. She couldn’t get comfortable and was inconsolable. All of that subsided but it was odd behavior for her, and she even seemed to be scared.
They couldn’t find the leak and embolize it. However, they said that just the act of going in could stop the leak. They did inject something, I can’t remember what it was called, to help stop it, though. The NP ended up fixing the wound vac only to take it back off, almost right back off. IR and surgery wanted a 48-hour break from the wound vac. But with all the genius minds of the doctors on the teams, they came up with the dumbest idea. They wanted to put an ostomy bag over the wound. These bags are made to go on the abdomen, not in the groin, with all the movement. They had taken Amanda for dialysis, and the ostomy bag was put on there. It leaked within an hour, and she was miserable during dialysis and through the night.
Responses
Letting you know someone in Minnesota is praying.
?????? still coming!!!