Spilling the Beans on Pediatric Transplant Life

Month: February 2021

Drinking Goals

Fluid is a big deal at our house. Since E has a kidney transplant, part of taking care of her transplant is making sure that her kidney gets enough fluid each day to continue working at optimal levels. This means that every six months, E’s doctors determine how much fluid she should consume each day based on her height, weight, and age to maintain the health of her transplant. Not an overly big deal, right? Well, it’s not a big deal for an adult. With an adult patient, doctors and nurses can explain why it’s necessary to drink a lot each day. It’s different with a kiddo though, and if you’re 16 months old when you get your transplant, it’s even harder to understand why everyone is making you drink all the time.

E was still on a feeding pump when she received her transplant, so meeting her fluid goal each day wasn’t hard at first. But as she got older and started eating and drinking more orally, we sometimes struggled to find the right balance of eating and drinking. Sometimes her feeding tube did a lot of the work since we simply couldn’t explain to a toddler the importance of drinking. Sometimes we used her feeding tube to give fluid because we battled puking from overloading E’s stomach. Then we really got honed in on a daily schedule for fluid intake that seemed to help most days. We were able to wean E off her feeding pump and onto three to four gravity boluses per day, supplemented by whatever we could give her in a sippy cup. Gradually, as her drinking skills grew (E had to relearn how to eat and drink after transplant), we reduced her boluses and increased what we gave her in a sippy cup. Now, at five-and-a-half, E is to the point that she can meet her fluid goal just by drinking some days. Most days though, she gets one small gravity bolus in the morning to start her trek to the day’s goal, and then she eats and drinks her way to meet her goal by the end of the day.

Even though E usually makes her fluid goal every day, it is still tough for all of us to make sure she reaches it. Some days it’s like pulling teeth to get her to drink, and a running tally of her fluid is always at the back of my mind. Her current daily goal is to get 1800 milliliters of fluid, or 1.8 liters. A five year-old doesn’t want to sit and drink almost two liter bottles of fluid every day! They want to get up and play, and they don’t understand why they need to drink all the time. E knows that she needs to drink to take care of her kidney because that’s what we’ve ingrained in her, but a little kid doesn’t really understand why all that fluid is necessary.

Our current method to meet E’s fluid goal each day is to start off with a bolus, as I already mentioned. Then we fill up a water bottle with 700 milliliters of water that she must finish before the day is done. We’ve found that this Bottled Joy water bottle is perfect for her because it has two measures of fluid, a straw, and a handle. So we can always see exactly how much she’s drunk and we can easily tell her how much more she needs to drink at any given time. The handle makes it convenient for her to carry the bottle herself. We have a white board in our kitchen where we record her bolus amount, how much water we put into her water bottle each time, and how much milk or juice she gets at meals. We also keep track of fluid-based foods she eats like jello, yogurt, pudding, applesauce, ice cream, and popsicles. Most often, we record her milk, juice, and other fluids using a digital kitchen scale. When a scale isn’t available for liquids, we use measuring cups. Every time we go on a trip, we take a scale with us and we always try to have snacks or bottles that have an exact measurement on them so we can record how much fluid E gets. On summer days, we try to give E extra fluid to avoid dehydration and we keep her inside at the hottest parts of the day. We know that on any given day, if E doesn’t meet her fluid goal and gets dehydrated, her kidney health could be in jeopardy and IV fluids are the next course of action in order to prevent rejection.

Water bottles with straws work well for us, but E still needs motivation and constant reminders to drink each day. Last year, we instituted a sticker chart for E’s fluid goal. Both E and her sister M like stickers a lot right now, so E and I designed a four-week daily chart for her. If she met her fluid goal each day, she got to choose a sticker to put on her sticker chart. Then if she filled all or most of her sticker chart, she got a prize – like ice cream and cheese curds from one of her favorite fast-food restaurants. The chart worked great for about eight months, and then fell by the wayside with the busyness of the Christmas holiday season. I’m not sure if we’ll go back to the chart in this new year. Right now I’m more concerned with preventing E from biting the straws on her water bottles so we can keep using the bottles. Since learning to drink again, she’s had a problem with biting when she drinks (her sucking mechanism didn’t resurface like we thought it would). Straws seemed to be a good way to teach her how to suck again and allowed her to drink more at a time than if we required her to just drink out of an open cup. But she’s bitten holes in her sippy cup lids and the silicone bite guards of her water bottle straws. Recently, she bit one bite guard in half! She does drink out of open faced cups at mealtimes, but we feel a water bottle is the best solution for nighttime, trips, appointments, and carrying around during the day. With a water bottle we don’t have to worry about spills or filling it as often. If she could stop biting, we could get her different water bottles with bite guards that aren’t so rigid. We haven’t found a recipe for success to get her to stop biting though.

E proudly displaying her first drinking chart. We sent this picture to her transplant nurse coordinator.

My hope is that someday E will get to the point where she’ll know she needs to drink a set amount each hour and that she’ll just do it. Maybe that will be with the help of a smart-watch that alerts her to drink every half hour, or maybe that will be with the help of a straw water-bottle that has different times marked on its side. In the meantime, we’ll keep watching her fluid intake like hawks, constantly reminding/encouraging her to drink, and hopefully find a way to help her keep her water bottles in good shape.

Pharmacy Troubles

If someone would have told me six years ago when I found out I was pregnant with my transplant kiddo, E, that I would derive happiness from ease of use of a pharmacy, I would have laughed. That sounds utterly ridiculous. That, however, is part of my real life as a transplant mom, and is part of the reason I wanted to start writing about my adventures in Transplant Land. To outsiders – those with no knowledge of what it’s like to live with a transplant recipient, something like getting medicine at a pharmacy is mundane, trivial, because you don’t need meds to live your life every day. Well, that changes when you or your loved one lives with a chronic condition like an organ transplant. Getting E’s meds is a HUGE issue for us.

For some context, E thankfully takes only two anti-rejection medications and one supplement every day, twice a day. She gets a small dose (really a whiff) of a steroid every other day, once a day. Her anti-rejection meds are generics, and they’ve worked well for her since her kidney transplant back in November 2016. We’ve never had to switch her meds, and she’s only ever had to scale down on the number of meds she takes, rather than needing to scale up. Changes made in her meds are usually dose adjustments to fit her current height and weight.

So if E only takes a few meds per day and those meds are generic, you might wonder what the big deal is about going to the pharmacy. Well, since E is a pediatric patient and she gets her meds through a feeding tube, her anti-rejection meds are compounds. This means that the meds are liquids that are specially made according to her doctor’s prescriptions. It also means that not every pharmacy has the capability to make these medicines, even though they’re common anti-rejection medications. We need to get E’s anti-rejection meds from a specialty pharmacy. After E’s kidney transplant, we were able to have her anti-rejection meds filled at our local Walgreen’s Specialty Pharmacy for three years. It was glorious. We’d been working with Walgreen’s Specialty since E had come home from the NICU and was on a host of blood pressure medications in March 2016. The pharmacists and most of the techs there knew me and were always so helpful. I never had to worry about billing errors, never had to worry about getting the medicine we needed on time, and never worried about a prescription being wrong in any fashion. The Walgreen’s Specialty Pharmacy even gave me three different options for picking up E’s medicine – I could go there, they could ship it to the Walgreen’s retail pharmacy closest to our house, or they could ship it directly to our house. Not only did they make it easy for me to work with them, but E also loved going to “her pharmacy” to get her meds so she could talk to her friends there. We still talk about our favorite pharmacist, Robin.

This is what E’s medicine cupboard looked like in February 2020.

November 2019 marked E’s three-year transplant anniversary. Reaching that anniversary meant that E is considered a successful transplant. But reaching that anniversary also meant E no longer qualified for Medicare as an end-stage renal patient. Good thing, right? It was good from the standpoints of successful transplant status and not having the headache of paperwork that accompanies Medicare benefits. It was terrible from the standpoint of losing pharmacy benefits. We are very lucky that E has not only private health insurance from her dad’s good job, but that she also has Medicaid due to being a medically-fragile, and sometimes complicated, kid to take care of. But even with having two insurance plans to help cover medication costs, our current pharmacy situation is a nightmare.

You would think that if you had insurance, and you had local pharmacies willing and able to make your specialty medications, that you would be able to easily get the meds you need. WRONG. Turns out, our primary private health insurance from my husband’s job has its own pharmacy benefits manager. And that PBM requires that we use CVS Specialty Pharmacy as our specialty pharmacy. The problem with this is that there is no local CVS Specialty Pharmacy. The CVS Specialty Pharmacy is a mail-order pharmacy based out of Pennsylvania. When we first started with CVS in January 2020, E’s prescriptions were sent to three different CVS pharmacies – the specialty pharmacy, the mail-order pharmacy (doesn’t fill transplant meds), and the local CVS retail pharmacy. I thought this was a headache! All of E’s meds were previously handled by the Walgreen’s Specialty Pharmacy for us, so the idea that one specialty pharmacy couldn’t handle regular, over-the-counter supplements and uncomplicated prescriptions never occurred to me. Once I canceled the orders at the separate mail-order pharmacy and were down to just two CVS pharmacies, the real problems started.

First, E’s transplant nurse coordinator had to call CVS Specialty multiple times for them to get E’s prescription dose and method correct. Then, it took multiple calls from me to get CVS to correctly enter E’s two insurance cards into her online patient portal. Once I got the insurance information sorted out, then the patient portal showed incorrect doses and methods of medications, as in, her portal said E would be getting her meds as pills instead of liquids. I called with concern about this error and was told that as long as the pharmacy had it in E’s chart that she needed liquids instead of pills, the method error I could see wasn’t a big deal. Then in April, I received a shipment of E’s meds in which the distilled water that I use to constitute one of the meds into liquid form was spilled inside the shipping container. This was a huge safety issue as the distilled water needs to be an exact amount for us to ensure that E receives the right amount of medicine per dose. When I called CVS to complain that the bottle they’d sent me was not sealed correctly and had spilled, the representative I spoke with told me that the spill couldn’t have been from their staff, but had to have come that way from the drug company (never mind the handwritten label on the bottle put there by CVS). I was sent a new bottle of that med.

In May 2020, CVS told me that insurance wouldn’t cover the whole cost of E’s other anti-rejection med anymore because CVS had to make it with a new ingredient that wasn’t covered by insurance. Neither I nor our transplant nurse coordinator nor the transplant pharmacists at our daughter’s hospital had ever heard of the ingredient CVS wanted to use and weren’t sure why insurance wouldn’t cover it. While E’s nurse, the pharmacy team here, and I were all trying to figure out what in the world was going on, E was running short on that anti-rejection med. When I asked CVS to please refill the med while we worked out the insurance and ingredient questions, the representative told me they couldn’t fill it until E’s doctor ordered her a new prescription for it and gave permission to use the new ingredient. Then she informed me that they would not send us a rescue dose of the anti-rejection med we needed until they knew E was for sure out of doses. When I explained that E would indeed run out of doses and that she NEEDS this med every day to maintain the health of her transplant, the representative told me that she understood all that and asked me to please calm down. I was so furious I was shaking when I got off the phone with CVS. Their approach to solving this problem was absolutely unacceptable. My last hope was to see if I could somehow get insurance to agree to let us fill all E’s transplant meds at her transplant center’s out-patient pharmacy.

That last hope saw the light of day for seven months, as E’s nurse coordinator worked her magic to get all of E’s meds – anti-rejection meds and supplements – filled at the hospital out-patient pharmacy. It was such a relief to work with people fifteen minutes away, who I knew I could go see in person if the need arose, and who were courteous and helpful on the phone. But alas, using our hospital pharmacy for the long term was not meant to be.

For healthy people, insurance changes with each new calendar year may go by mostly unnoticed. Not so for us. When January rolls around every year, there are always some changes in store for us. On December 31, 2020, I was told that in 2021, our private health insurance would no longer let us fill E’s anti-rejection meds at her hospital pharmacy. We would have to go back to CVS Specialty. After everything we’d dealt with at the hands of CVS, I was not about to go down without a fight. So my husband and I did more research into our pharmacy benefits. We created accounts on our PBM’s website and researched covered pharmacies. We researched covered drugs. We enlisted the help of the transplant pharmacy financial coordinator at E’s hospital to avoid CVS in any way possible. I even called representatives at the PBM on three different occasions and asked if there was a claim or exception I could file so we could get permission to have E’s meds filled at either our local Walgreen’s Specialty Pharmacy or the hospital out-patient pharmacy. I was the happiest I’d been in months when the first PBM rep informed me that our Walgreen’s Specialty Pharmacy was in network. Seriously. Happiest I’d been in months. In fact, I was so giddy, I smiled and laughed all day and my husband laughed at my giddiness. Unfortunately, that giddiness was also short-lived. Walgreen’s Specialty called at the end of the week to explain that insurance wouldn’t cover the anti-rejection meds if we filled with them, but if there was anything they could help us with, to please let them know. When I called the PBM another three times the following week to find out what was going on, I was told that our Walgreen’s Specialty Pharmacy was in-network for us, but not for E’s anti-rejection meds. We have to fill the anti-rejection meds with CVS Specialty Pharmacy or pay out of pocket for the drugs. The only recourse available to us if we wanted to fill meds locally would be to ask our Walgreen’s Specialty Pharmacy to fill out a contract with our PBM.

On January 13th, I finally accepted defeat. I asked our nurse coordinator to send E’s prescriptions back to CVS Specialty. She was told they would call me to verify insurance and schedule shipment. When they didn’t call me by the next Monday, I called them. I verified E’s insurance plans to the representative I spoke with and was told that another pharmacy rep would call me to schedule shipment. By Wednesday, I hadn’t heard anything more, so I called again. When I explained to the rep that I was trying to schedule shipment of just one of the anti-rejection meds this time, she told me that there would be a copay because one of E’s insurance plans wouldn’t cover the anti-rejection med we needed. When I asked her to explain why, she told me that this particular anti-rejection med wasn’t in the formulary of covered drugs for the insurance plan. So, if I didn’t want to pay for E’s med, I needed to call the insurance company and I needed to have E’s doctor send a prior authorization request to our insurance company to request they cover the med. E’s anti-rejection meds are both generics, as I said earlier, so I knew that there was no way either of them would be refused by insurance. But I pulled up the drug formulary for our insurance plan, called our nurse coordinator so she could work on a prior-auth, and then called our PBM. After four hours on the phone that day, the PBM representative and I got CVS straightened out. Insurance would cover the med and I wouldn’t be charged a thing. The problem was that CVS wasn’t billing all the correct ingredients for the med to insurance and weren’t billing the med as a compounded liquid. The next day, when I called to schedule shipment, I spent over an hour on the phone with CVS Specialty in the morning when they told me that I would be charged a copay for that anti-rejection med after all because E’s secondary insurance wouldn’t cover it. So I spent another afternoon calling E’s secondary insurance, gathering the correct information for CVS, and then calling them back to set them straight and remove my copay. Finally that evening, I got an email that E’s med had shipped. Then I got another email, this one stating that CVS had shipped me E’s other anti-rejection med, even though I didn’t order it. I spent an hour on the phone the next morning canceling the med we didn’t need so our insurance wouldn’t be billed for it. E’s generic anti-rejection meds retail for over $1,000 and $300 a bottle, respectively. So hopefully now it is apparent why a pharmacy that can’t make these medicines correctly or bill insurance appropriately is a real problem for us. I didn’t train to be a pharmacist or healthcare professional. I already have so many other things to worry about with E, not to mention the normal business of life and another kid to manage, that I shouldn’t have to spend so much of my time sorting out CVS’s errors. Many of my former coworkers worried that I would be bored when I transitioned to being a stay-at-home-mom last year. How could I be bored when I spend many of my days dealing with pharmacies and insurance companies?!

I keep asking myself in what world is it ok for an insurance company to dictate what pharmacy fills prescriptions for a patient? If the patient has health insurance, the drugs are covered under insurance, and the patient has a local pharmacy willing and able to make their medicines, why doesn’t it make the most sense to let the patient go to the pharmacy most convenient for them? It boils down to money for the insurance companies. I corresponded with another transplant mom who is a nurse case manager with an insurance company. She confirmed what I suspected to be true: insurance companies limit customers/patients to specific pharmacies in their networks because those pharmacies give the insurance companies deals on the drugs they make. In our case, CVS Specialty Pharmacy gives our insurance company the best bang for their buck when it comes to making expensive transplant medications. It doesn’t matter that CVS Specialty is not convenient for us and that it has terrible customer service. It doesn’t matter that there are brick-and-mortar specialty pharmacies within twenty minutes of our house that can make E’s anti-rejection meds just as well as CVS Specialty. This whole situation feels like the insurance companies are preying and capitalizing on the people who need them most instead of doing their best to support those people to better health. The worst part of our pharmacy troubles is now knowing that our situation is not uncommon. I recently heard from transplant families in other states that they experience the same problems and issues we do when working with CVS Specialty and Accredo Specialty Pharmacy. Several parents told me that their kids have been forced to go without doses of their anti-rejection meds for several days until their mail-order specialty pharmacy could get them their meds! This is a severe health risk! Others stated that they’re regularly forced to go to their hospitals for emergency doses of anti-rejection meds until their specialty pharmacy can deliver meds that have been delayed.

If I could go to Capitol Hill and speak with Congress about prescription drugs, here is a version of what I’d say: if an insurance company is allowed to limit my child’s pharmacy choices because it’s convenient for them, and then the designated specialty pharmacy doesn’t do its job, how is that caring for the most vulnerable of our population? Transplant patients already have complicated medical conditions to manage, why are these companies making it harder for them? My child didn’t ask to be born with a rare genetic disease that necessitated an organ transplant in order for her to live. But our family has fought tooth-and-nail for her to live and my husband does his part in working to pay for health insurance. Why should our daughter’s health be put in jeopardy to line the pockets of insurance company executives? Why isn’t a free-market economy allowed when it comes to specialty medications?

I’ll save my thoughts on the costs of prescription specialty medications for another time.

Now that we’re stuck with CVS Specialty Pharmacy for the foreseeable future, my new method of dealing with them looks like this: document each phone call by taking detailed notes, including the names of all the people with whom I speak. Fill out CVS customer surveys in detail each time I receive them. File formal complaints with our health insurance company each time CVS makes a grave error in E’s prescriptions, we don’t receive meds on time, or when bottles arrived damaged. Procure rescue doses from our hospital pharmacy if/when we need them. Fill all non-specialty prescriptions at Walgreen’s. Lastly, hope and pray for drastic improvement in customer service…and the ability to choose a specialty pharmacy that works for us!

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