Thursday morning, everything was looking good. Amanda’s kidneys just needed to wake up a bit more. She wasn’t drinking much; I thought I’d entice her with a StarBs refresher, but she still wasn’t interested. Surgery was the first team to round. They were all pretty young, and I keep thinking, where are the parents? There’s no way any of these are full-fledged surgeons! They talked a bit; they had the surgeon attitudes down pretty good already, cocky! I had a few questions about the abdominal drain and when it could be removed, since it was really bothering Amanda. She was dealing with some unusual back pain which was likely related to the drain tube. There was some weird pain when she had the chest tubes still in after the heart, too.
The team checked the incision, but didn’t remove the dressing just yet. It’s a big cut, much longer than her sternotomy scar, and shaped like a banana. Probably 10 inches or better and starts around her belly button, curving toward the outside of her boob. I was surprised by the size. They had less access going between bones in the middle of her chest for a bigger organ. Yet the smaller organ, nowhere near bones, needed bigger access. We were thinking it was because of the depth as to why they needed such a big incision. Also, on a side note, Amanda now has three kidneys! They don’t remove the old ones, and the new one isn’t anywhere near the originals; it’s down low, close to the bladder.
The next team was nephrology. They didn’t look much older, but I could buy that at least one of them was a full-fledged doctor! They didn’t have much to add, but gave us a rundown on when things should happen per their SOP. There was a fellow with them that I recognized. He was one I jumped all over in the ICU about trying to get Amanda to sign consent for something when she was incoherent. It was obvious she couldn’t make any decisions in her state. He pushed the papers in front of her, didn’t even offer a pen, and expected her to sign. I jumped up, smarted off, and yanked the papers out of his hand, demanding a pen in anything but a cordial manner! Towering over his small stature, I think I scared him a bit! The ICU was rough; tensions were high, and I wasn’t one to be trifled with then! I ended up liking him after such a long stay, and it seemed he had gotten over my ICU frustration that I aimed at him. The attending nephrologist was funny and commented on me leaving my boots at home; I’d swapped my cowboy boots for some running shoes for the day! I guess it is a bit odd to wear boots here, at least in the hospital; not many do. I can’t sneak up on anyone on these floors with my leather soles clacking down the halls either!
The cafeteria nutrition lady stopped by to see if we needed anything. I was in the bathroom but heard her voice, thinking it was the one we had on the heart floor. When I came out, I noticed it wasn’t, but I asked if she was the other one’s sister. She squealed and said, “How you’d know!” They don’t look too much alike, but the mannerisms were identical! Her sister was so sweet to us and always did a great job. Not long after, I saw a housekeeper I recognized, so I went to talk to her. She wasn’t the one from the heart floor but was friends with her. They always got together outside, and sometimes inside our room, to gossip about the other housekeepers since our room was the first on the unit! It wasn’t thirty minutes after I saw her that the heart floor housekeeper came to see us; word travels fast, I guess. She said, “These are my people, my favorite people! Ms Simmons always has a smile on her face; her attitude never changes- always in a good mood!”
It was time to change the dressing on Amanda’s dialysis port. When the nurse saw it, she commented on how good the dressing looked. She thought a nurse had done it, commenting on how bad some home health dressings are. Amanda had done it herself. I’d say that’s a pretty good comment, since Amanda can’t see it and uses a mirror to get it placed on the upper part of her chest.
Bev and Sam stopped by for a visit. It didn’t last long. Amanda had a catheter leak, so they stepped out for a bit while the nurse assistant came in. Amanda was pretty perturbed, so I went to hang with them in the hall. They were walking labs, so I joined in. I went back in after a few laps, but Amanda wasn’t in much better of a mood. I was trying to encourage her, but it wasn’t helping. I was pretty much like, if this is as bad as it gets, we are doing great! Bev and Sam came back in for a bit, then an ultrasound tech showed up to do an echo of her heart, so they left to come back another time.
We had a coordinator come by, not the one we’ll have after transplant but another. I would prefer we get to meet in person, but that’s not how they do it here. We can’t even have a direct phone number for them. The MyChart app is the main means of contact. They came to go over how things would go after discharge. I was questioning appointments and flexibility, hoping to at least get Amanda home for a week after recovering a bit. The tentative plan is to get her one mid-July for a week. As for follow-ups, it’s weekly appointments for two months, every other week for two months, and monthly for, I don’t remember how long. We have a printed appointment schedule out till November.
I was surprised to hear that the long-term follow-up is every three months. My first thought was that it will interfere with everything! Heart will go out to six-month intervals and eventually yearly. They only do biopsies if there are signs of rejection, not routine like the heart team. Genetic testing for rejection isn’t as accurate for two different organ transplants, since it can’t tell which one would be rejected. So, I think the appointments are mostly for labs. If that’s the case, I’ll be pushing for us to do labs in Texas and to push to at least every six months and only come up if something goes awry. I mean, Tennessee is pretty, but if it were every three months in Colorado, maybe I wouldn’t balk so much! We are still a long way from figuring things out. Let’s just say we’ll be in Nashville a lot over the next year for sure. Once our lease extension is up in October, we’ll need to butter up some local friends to see about crashing in spare bedrooms!
We had a friend from church set up a meal train for us. She pretty much begged me to set it up! It’s one on a pretty neat website. It didn’t take long for people to start picking dates and sending food delivery gift cards. She also added a donation spot. We are blessed to have our Nashville faith family step up to help. They haven’t been through a big surgery or a rough patch with us yet. They seem eager to help, though. The new pastor had texted me and said: “Your Crievewood family is with you.” We knew that already; the first time I met him, I was bragging on the congregation. Let me just say if you are out there doing your Christian life solo and not part of an in-person congregation, you are missing the point. It’s hard to show or receive the love like we’ve expressed from both of our churches, from a distance. If you feel alone in your walk, go find you a church family who’s ready to love on you; the connection is so important to your faith journey.
The surgery team began to step down the dopamine and increase the oral BP meds, trying to find a happy medium to get Amanda off IV BP support. It’s tough with her, though; she runs low, typically 90s over 70s. The line is fine to balance things, because the new kidney may need higher pressure to perfuse and function well. Output has increased but barely. Also, Amanda isn’t drinking well, and I’m getting tired of hounding her about it. Still, though, she was about 20 pounds over her dry weight, retaining fluid from the surgery.
I ordered delivery with one of our new meal train gift cards. As I rode down the elevator, I noticed a nurse from the heart floor. I asked her, “Are you from 7MCE?” She looked at me and said, “Who do you belong to?” Then another member, a nursing assistant from the heart floor, saw me and came to shake my hand, asking about Amanda, even checking on her knee. I ordered from a local Italian place I knew was a good after-surgery choice. Amanda ate a little, but not much- still something.
I’d wanted to go to bed early, but it didn’t work! I was tired but couldn’t sleep. I ended up reading till I could barely keep my eyes open. I was not on my phone, holding it above my head. Back in the days of CaringBridge postings, I learned the hard way not to do that. I dropped my phone on my face many times when I used to write all my posts on my phone instead of on a Mac, as I do now. Amanda pretty much naps on and off all day and the same at night.
About four in the morning, the nurse barged in, flipping the lights on without warning. One of Amanda’s IVs had infiltrated with the dopamine. That med is terrible about killing IVs, and it burns bad when that happens, too. The lights were so bright, and I just couldn’t go back to sleep. Our window faces east, and not long after, the sun started peeking in, so I gave up and just got up. The sun rises nearly an hour and a half sooner here than back home. I’m not a fan; I don’t want to see the sun anywhere close to that early!
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