Home Dialysis

No new calls for a kidney…yet. I know that’s what some of you have been wondering! Amanda has been in training for home dialysis for a few weeks, since we returned earlier this month. I’ve been back and forth and had planned to return to be with her when she started it at home. We thought it would be sooner, but I was back up here when we originally planned for me to come back, on the first phase start call. I only made it halfway out of Texas, driving up for the second call. I’m currently back in Nashville, though.

In preparation for the home sessions, Amanda has received about 35-40 boxes full of supplies and backup items she may need. While I was back a couple of weeks ago, she received a few boxes to our package locker room. I was able to grab them and then store them in our guest bedroom, not finding a permanent home for everything until we received the final haul. It was a good thing I was there because they were heavy, and Amanda wouldn’t have been able to get them loaded and to the apartment solo. I loathe the apartment package locker. Think Amazon Locker, but located in our apartment office. I want to be able to open the door in my underwear and quickly grab a package I’ve been waiting for, not get dressed and walk to the office to pick it up! This is a service we have to pay $10 a month for, too. A supposed convenience, yet it is only an inconvenience. So, I told Amanda she needed to talk to the dialysis supply company and let them know they would need someone to deliver the packages to the apartment, preferably inside. Thankfully, they had a delivery service bring everything into the apartment, all 28 boxes! They would stay in place waiting for my arrival.

I arrived on Friday afternoon. Originally, I was scheduled to fly up on Saturday, but as is typical with the railroad, things didn’t line up. I thought of driving, but with the rise in gas prices, it costs more to drive than to fly right now. So, I swapped flights around to leave early. I was worried after seeing long lines stretching out of the Austin airport earlier in the week. With the TSA issue, South by Southwest, and spring break, AUS was crazy. Thankfully, with my Precheck, I breezed right through. With only a few people in front of me at the TSA checkpoint, I knew I could get out early. So, I quickly changed my flight to one that left a couple of hours earlier while in line. The only downside to leaving early was that I got the last seat, a middle one between two other guys. It was in the back with less legroom, too, and my knees touched the seat in front of me no matter how I sat! At least it was only a two-hour flight.

Saturday, we hit up a farmers market we hadn’t been to in a while, grabbed some coffee, and made a drive out of going to the chiropractor, 30 or so minutes away. I’d already had reservations at a nicer place for dinner that night. It was in Brentwood, in an old residence that used to be a horse farm. It had a nice ambiance that reminded us of a fine-dining restaurant we frequented in San Antonio years ago, with each room of the house making it feel more intimate. The meal was great, and it was nice to get out for a date night. 

Later that night, we had a scare, though. We all three were in the living room watching TV. Tank was on one of his two beds, which he has in the same room. One for looking out the porch french door and one right between our chairs, because he likes to be close to us! Yes, he is spoilt rotten. He got up from a nap, coughed, then fell over backwards, having a seizure. His eyes were eerily open as he convulsed. It was scary, but didn’t last long, only a few minutes. It freaked Amanda out, though; she was a wreck afterwards. After lying down and recovering a bit, he finally recouped and was walking around his usual self, wagging up a storm. After using my GoogleFu, I determined it wasn’t an emergency since it didn’t last too long, but we needed to wait and see if he’d have any more within 24 hours, which he did not. I still got online and scheduled an appointment with the vet’s office first thing Monday. After everything that had happened with having to put Zoey down while Amanda was in the hospital close to Christmas in 24, we need Tank in tiptop shape. It would make a tough situation only harder if we lost Tank now while Amanda is solo here in Tennessee. It was a blessing that the seizure happened while I was here, though. Amanda was freaked out enough with me here when it happened.

On Sunday, we made it to church, but Amanda made sure the Ring camera in the living room was on to keep an eye on her boy. Church here has become more like home. As we know more and more people, we stay later and later talking with everyone, just as we do back home! We grabbed some soul food from a place connected to a church. I’m pretty sure the couple serving the food are the same ones who are preaching next door! It had been a while since I’d gotten food there. It is good food and authentic; they have the best collard greens I’ve had in Nashville yet. My only gripe is that the cornbread is sweet. I’m not a sweet cornbread guy, but sweet cornbread seems to be the norm here in TN. One thing I keep noticing every time I go is that I’m always the only white boy in there, so I’m guessing it is pretty authentic! It is take-out only, so we grabbed some plates and went home to eat.

Sunday was a workday; we had nearly 40 boxes to organize. We’d pick up a tool cart for the immediate supplies Amanda needed for each session, but I’d also ordered a wire rack to store a couple of weeks’ worth on it. The rack showed up in the package room while I was gone and was shoved into a locker so tight that Amanda couldn’t budge it. She called me pretty perturbed about it. If you’re married, you know the call: like I’m supposed to FaceTime, reach and grab the box, pulling it out for her! I told her to go to the office and ask for help, but she was hesitant. The lady who rented me the apartment is super sweet and always says she wants to give Amanda a big hug. Amanda didn’t tell her who she was or our apartment number at first. So, when she asked our apartment number to get the locker open, she squealed, “You’re Amanda?” She planted the big hug she had been wanting to give, telling Amanda how she had such good energy! Together, they got the package out, and she even helped Amanda load it into the car. 

The first order of business on our workday was to assemble the wire rack and tool cart. Then, to open the boxes and start packing the cart to know what Amanda needed for each session, and how much to store. It took all afternoon and evening to get everything put away. What didn’t fit I stored under the guest bed, which took up a good portion of that real estate. Amanda had questioned me a little on the cart and the size of the shelf I got, you think, as long as we’ve been together, she’d know better! She got everything perfectly placed and well organized, as she always does, and is so good at. We ended the night by packing out the boxes and trash into the dumpster. We thought, while we were out, we might as well swing by and grab a pizza for all our efforts! We crawled into bed late and tired.

Monday was an early rise with the dialysis machine being delivered just after 7 am. The delivery and setup guy was the same guy from the home assessment and was nice. After much talk with him and the home assessment lady, we decided to put it between our recliners. This machine is large and requires a water supply and a drain hookup. We had him route the lines to the laundry room. Since Amanda’s first session would be soon after, there wasn’t enough time to make a bag of the mixed dialisate. So Amanda was to use premixed bags, five five-liter bags in all, plus a bag of saline. It’s a process with lots of lines and honesty, surprising that people do this type of dialysis at home. Amanda had me hang the big bags up. After getting them hung, I worried she’d have a hard time getting bags hung solo. The premix bags are only used if she has an issue with the water or messes up a batch, so hopefully she won’t need to use any. 

The nurse was pretty impressed by our setup. She said she really liked our cart and hadn’t seen anyone use something like it before. It is a tool cart with a drawer and can handle a lot of weight, including premix bags and whatnot. It’s fully outfitted with accessories like a latex glove box holder and a drink holder, aka the sanitizer bottle holder! It has large wheels designed to roll over things, so it easily goes over the rug and whatever else is in the way. Amanda can store a week’s worth of supplies on the cart alone. The nurse was mostly twiddling her thumbs. She said they usually help get all the supplies put away and organized on the first day, but we had already squared away. Amanda completed her dialysis session all on her own, too. 

The nurse wanted to go, but I think she had to stay because of their policies for the first session at least. She did go out to her car for a while, though. The sessions are only three hours, but it takes an hour to prep and prime the machine. Then, depending on the day, she has to make a large batch of the dialisate, totaling 50 liters. Since it was the first day, she needed to make the big batch so it would be ready for the following day. Not long after the nurse left, there was an issue with a big filter pack. Since this one is typically only changed every 90 days, Amanda hadn’t swapped it out yet. So the nurse had to loop back to help. It didn’t take long, then they had things back on track. The machine ran for a while, making the batch. It took six hours to prepare the batch for the next day after Amanda hooked up all the lines. In case you haven’t figured it out, doing home hemodialysis is a lot!

While Amanda was doing her dialysis, I took Tank to his vet appointment. Turns out the vet was thinking and hoping it was a one-time thing, but wanted to run labs. Before we moved to Houston, our first temporary hospital residence, Tank, hadn’t been to a vet’s office! We have our small town county vet who usually meets us at the gas station or at the house to give shots and whatnot. The last time we needed a steroid shot from him for Tank’s allergies, he never got out of the car. As the vet walked towards us with his needle and syringe, he asked me what Tank weighed as he drew the medicine. I held his Tank’s head, and the shot was done. That’s been his typical vet experience! 

I got a call from the vet yesterday. Everything looked good, but Tank had antibodies for a tick-borne disease. It could have been an older infection or be active, but needed further testing to determine. The vet said we could just monitor him, do the extra testing and see, or start a course of antibiotics anyway. I chose to go ahead and treat him. As I mentioned, we need to keep Tank healthy! With the vet bills adding up, I think this visit and treatment may have cost me my return trip for Easter, since the total came to the cost of a round-trip ticket!

Amanda had some genetic testing done a while back that the hospital offered. The test was to further explore any links to Amanda’s condition and genetic causes. All the testing came back good, and nothing significant to link to genetic causes. There was one unidentified variant, which pretty much means they don’t know anything! I have a new Nashville friend here who is a genome expert who worked at Vanderbilt in the cancer research department and has just gone into the private sector. I told Amanda we need to grill him about the test the next time we see him!

Tuesday, we got up early and went to the church. They were having a donut and coffee drive-thru, so we went to help. It was a neat event, and we enjoyed helping and maybe stealing some ideas to implement back home. We handed out donuts and prayed with a good many in the drive-thru line. One story I have to tell about myself, though. I asked this couple who had a spastic golden retriever in the back seat if they needed prayer. The husband said they were headed out on a trip and that they were recovering from an ear infection, pointing to the back seat. I pray for them, including the pup’s ear infection. When I was done, the husband said the golden had some ear infections before, but he was talking about their son. Then the dog moved his big head, and I saw the car seat with a baby in it! At least the Lord knew to reroute the prayer to whom it should have been for!

After we got back from the church, we didn’t have long before Amanda needed to start dialysis. The nurse was coming for the initial hook-up, and then she’d leave once everything started. During the hook-up, some testing needed to be done out of the dialysate. There are multiple tests that Amanda has to take and ship off from the water to the filter pack liquid, and so on. She has still been super tired after dialysis, napping for a while. It seems to wipe her out afterwards, not sure if she is napping during the sessions much though. Even when she runs it herself, she can still nap if she needs to. There are all kinds of sensors added since she is considered a “solo” patient, with no one to watch her.

Today we had a heart clinic follow-up, and Amanda had a routine nuclear stress test. We joked that at least we weren’t home, having to go through the border patrol checkpoints. They wear alarms for nuclear material, and after a test like this, Amanda would have set it off. Once we had a fairly green agent’s alarm go off when we pulled up for the inspection. He quickly had his hand on his pistol as if we were terrorists! Back home, we always get a letter stating of the test, to calm agents like this.

The follow-up went well. We didn’t have anything going on, and the NP (we didn’t see a doc) thought everything looked good. Amanda usually gets a call the following day with any adjustments to meds once the labs clear. She originally thought the stress test was a PET scan. Turns out this stress test lasts 3-4 hours, too. So it was a lot of waiting today. Amanda had to fast for labs and the stress test. I’ve been fasting in solidarity, but once she went back and was told she had to stay back the entire time, I slipped out to head home and grab something when she heads back. I also caught up on some year-end reporting for the union while I had time. I’m cutting it close on my reports due to the end of the month, but I accidentally left my union laptop here last time!

I fly out late tomorrow night, Thursday. It was a cheap return flight, but I’m sure I’ll regret a 1 am arrival in Austin, followed by the 3-hour drive home! At least this flight I’m not in the middle seat, though. I’ve been playing with the idea of coming up for Easter, but I’m not sure. It’s just so soon, and I really need to work. I really wanted to be here for the holiday, but I just don’t think it will work out. 

Amanda has her first totally solo dialysis session tomorrow. She wanted to push it to Friday so we could maybe do something, but I’d feel better if she did her first solo run with me here. That is half the reason I came up. It may be a Costco date kind of day if she feels up for anything afterwards. We do plan to have dinner out at a place we like by the airport right before I fly out.