Home HD: The Value of Flexibility
As I write this blog post, my wife is preparing for her treatment today. I am in a more reflective mood than usual. We spent part of the morning rearranging her supplies, unpacking some of our boxes and performing some generally overdue housekeeping—more about that in a moment. This has been a week of an unusual amount of good news! She received notification last week that she was officially listed for a kidney transplant. There are some very specific restrictions, unlike most patients, but she is listed nonetheless.
I received a call this week from my donor coordinator, who wanted to first determine if I was still willing to donate and, if so to schedule the next set of evaluations. I knew that this day was coming, but I did not think it would be so soon after she received the official notification. Then, to further lead me to excitement, I received a call from my donor advocate and today received a comprehensive package in preparation of my evaluations next week.
(Quick side note: Melody began the process in the spring and with the pandemic, the provider was rightfully focused on their surge of patients and the additional testing she needed was delayed until late fall. In my over eagerness, I began the first steps of the donor evaluation once she was conditionally approved and it has been in a holding pattern since then.)
Two years ago, almost to the day of writing of this post, she had just been released from the hospital after 20 days and had just began dialysis with the “emergency port” (chest catheter). She also weighed 85 pounds and quite frankly we were overwhelmed with the “new lifestyle” we were embracing.
Melody began her HHD training almost a year ago, and we completed it just before the pandemic and associated shutdown. In looking back, the timing of HHD could not have been more perfect. We settled into the new HHD routine, and it was overwhelming at first because of the fear and anxiety of “doing it on our own”, various vendors delivering equipment and supplies, and all the while to maintain her treatment schedule, my work schedule. I was working from home so that made our situation easier, and, like everyone else in the world, dealing with the pandemic and what changes that also brought.
We did settle into the routine, obviously, and it has been fantastic! In fact, I think back on my fear and anxiety and get a bit embarrassed at my silliness. The benefits that are commonly known include more gentle treatments (as the flow is slower) making it less taxing on the patient, comfort found at home rather than traveling to a center, and managing expected challenges with employers (holidays, vacations, delay from scheduled “chair time” and the like. Twice the clinic was shut down because an employee had improperly created the mix…), and flexibility. Today, I will share the value in the flexibility of treatments.
We were planning to leave our community, and decided that during the pandemic was the best time to sell and move. If you have ever sold your home, you know the challenges that come with that- showings, inspections, and other disruptions to your regular schedule. There is also the challenge in packing, looking at properties, and all those details. Our selling process was relatively pleasant, and for that we were thankful, but we began to realize the true value in the flexibility that HHD offered to us. Before this, Melody had also figured out the best time of day her body responded to treatment,as being at home she could experiment.
We found a property that we just had to have: a total rehab, it had been vacant for a several years, but with the pandemic and my profession I had plenty of time and we decided that this would be a great idea. She was feeling better, had energy, and loves to do interior design work, and this afforded us a blank canvas to work with, if we ever got it cleaned out. Our house sold within a couple of weeks, our offer on the rehab was accepted, and we planned both closings on the same day.
The day before the rehab closing, we were notified that “because of covid” there was a delay with the county’s duty (title search/right to sale) and this delay turned into 6 weeks. SIX WEEKS that we were essentially homeless. Six unplanned weeks! At the time, the closing was rescheduled for the following week so we did not know it would be six weeks. Oh-my-goodness, what will we do? We cannot live in a hotel indefinitely, and the treatment equipment is a consideration, along with the three rescue dogs and a parrot. WHAT WILL WE DO?!
My mother-in-law (thinking it was just going to be a few days) offered to let us live in and do treatments in her house, which her son and his girlfriend also lived in. The original plan had been to do the treatments there until we could safely do them at the new home. We were thankful, boarded the animals, and after a week finally got the rehab owner’s consent to store our moving truck with all of our possessions, in the storage building of the property.
We also, of course, were using bags during this “few days before we can move.” The plan had been to continue doing the treatments there until we had the power and water up to code at the rehab, so this fortunately had already been partially planned.
Her treatments continued, and her labs remained good. Then, her brother’s girlfriend decided to bring her daughter to move in with them, who lived in another state. It was obvious they did not take the pandemic seriously, so we felt it was safer to avoid contact with them for 14 days. This meant a move of the equipment, but we also were finally clear to close that week! We moved the equipment to her Grandmother’s “sewing room” in the house next door, which in some ways was a little easier, since there was a sink there.
Grandmother, however, is very particular and set her ways, and by that, I mean, set in the way she thinks that your ways need to be too! My wife is a creature of habit and routine, so changing her “treatment environment” was already a transition, and her grandmother’s “helpful input” as to where her supplies should go interrupted her routine too. In the end that meant treatment would be in the sewing room, while the supplies would be in the “solarium,” an enclosed area on the other side of the house that once was an indoor pool. I have never cussed carrying boxes of bags so many times in my life! They are heavy. Each treatment takes 2.5 boxes. There are four treatments a week. The clinic had difficulty getting the supply deliveries to the right address, once being at her mother’s, then, next her grandmother’s, so some days there was a bonus exercise taking 30 boxes from one house to the other, through it and to the other side of the house for storage.
I hate bags. With a passion. However, I am very thankful for said bags because without them, this transition would have probably led to her being switched back to in-clinic and at that time (especially in the middle of the pandemic with cases appearing at the clinic), that was one of the worst times possible. Because of home HD, Melody’s treatments were never interrupted and even with the “let’s pack up and relocate in 12 hours,” we did so easily, which really solidified the value in the flexibility of HHD!
However, there is more to the story. By the day after the daughter came from another state (her mother did not believe in masks or distancing, and even theorized that covid was a government conspiracy because of a deal with Chinese farmers…), we had already moved her equipment—and our realtor called to say our closing would be the next day! We closed on the house and began what we had originally planned: we would start the rehab, but now perform her treatments at her Grandmother’s house. However, because the animals had been boarded for 6 weeks and had no more time at the inn, we had to have a new plan. I had planned to stay at the rehab with a generator to get the initial work (plumbing and electrical) complete, commuting to help her with her treatments. She would stay with me and we would get the work done and that evolved into us going “camping together” and traveling to her grandmother’s for shower and treatments. What a fun summer we had!
We eventually got the plumbing and electrical done, returning the generator to its “backup source” purpose. Once we had running water (working bathroom and kitchen sink!) we moved her equipment home. In the meantime, again because of benefit of home HD, we could manage both of these things and we are proud of the progress we made. We lived in a house with no power or water, worked like crazy in the hottest part of the summer—and because of home HD she maintained her health and her treatments!
During this time, remember I mentioned the clinic difficulty in supplies? They had not changed her prescription to bags, so we continued to run out of bags, and her nurse asked, “how soon can you get the PureFlow set up?” I ran the plumbing (a drain and water connection, quick, fast, in a hurry and quite creative) and we started using SAKS again. That was such a happy day…until the next two NxStage shipments of boxes arrived. They had finally gotten her prescription changed to bags—at just about the time we were set up to use SAKS. Guess who is “thrilled with moving boxes and hanging bags?” ME! Note the sarcasm!
Melody found the perfect place for her equipment, and we slowly settled into the routine at home. The house was still a war zone, so we had temporary places for her supplies, but as I write this today, we are finally settled in (and there are 36 more boxes in the living room before getting back to SAKS. I am going to throw a party when those boxes are gone!). As of today, we even repurposed an awful column to store her go-to supplies and she remarked “you know, since we organized, the setup is so much faster.” Only a home HD patient will understand this but now “it feels like home.”
After the great news this week, reflections on our summer, and the house today versus what we started with, it blows my mind how beneficial home HD has been for us. Because of home HD, as these circumstances—especially the ones out of our control—popped up, we were able to adjust. In theory, we could have performed the treatments using the generator (it is a large wattage one; it had to be to run the portable AC and my necessary espresso machine!), but neither of us were that brave.This flexibility also allowed us to plan her treatments around the chaos of our transition and rehabbing a house. This flexibility has allowed her to maintain her treatments (and her labs have remained stable!), and the various appointments for “additional testing” in her transplant evaluation, we were able to work around while keeping her treatments on track. This would not have been possible without home HD and the solid logistics system of NxStage. We even had a sensor failure during the transition and still received a new one overnight.
If you had told me that we would have even considered doing something this crazy, I would have told you how foolish you were and how there was no way that we would put her health or treatments in jeopardy. However, because of home HD we had this opportunity and while we have a long way to go with the house, my wife is much happier than most any place “ready to move in” would have made her. Home HD provided new opportunities and by nature of its flexibility, no matter what life has thrown at us, it allows us to adjust and maintain her treatments.
If you are considering Home HD as an option, you probably do not expect that you will do something as crazy as we did, but you could consider the flexibility will allow you to travel more, an extended visit with the children or new grandchild several states away, or like I did two summers ago, a semester in Israel. Home HD provides the patient with “easier” treatments, control over when the treatments are done, and some amount of control over their life and yours! I know this may sound silly, but when you have doctors, and clinics, and others dictating what, when and where to do it to stay alive, that lack of control, in my opinion, has an impact on stress and overall psychology and those impact effectiveness of treatment (in my opinion, let me stress I am not a licensed provider!)
Your results may vary, but I hope that this provide some encouragement that home HD leads to more “freedom” over your life. As a care partner, dialysis is not just an inconvenience to my wife, but also to me. I realized and adopted a philosophy that the pandemic restrictions she has being immunosuppressed and medically fragile, applied to me also, because I am her care partner.
While we care partners cannot understand how dialysis feels, we do share some of the “suffering” and inconvenience that it brings. Home HD has given us so much more freedom. In a small way, she even seems to be more excited about treatments. I cannot imagine that anyone “likes” to do treatment but home HD is a “treat” to make the treatments at least more tolerable!