Spilling the Beans on Pediatric Transplant Life

Tag: Kidney

This and That – Summer Update

Before I write about other topics I’ve alluded to in previous posts, I thought I’d provide a few updates on various happenings I’ve written about so far.

I’m happy to say that we found an open-mouth water bottle that seems to work for E. She had a small Minnie Mouse water bottle with an open mouth that I rediscovered after I wrote the post about drinking goals. I substituted it one day in place of her straw water bottles and she did very well with it. So, I decided to see if we could purchase another bottle like it for some variety. After looking around for a while, I decided on this Takeya one. It’s sturdy and easy enough for E to open, and I like that it’s a little smaller than her Bottled Joy bottles. I also really like the handle on it so she can carry it around. I ordered M some new water bottles too (she’d also bitten through all her straws), and in the process found the next one I’ll buy for E when one of hers needs replacing: it’s this Rubbermaid bottle. It seems like the best combination of both types of her current water bottles. And while my husband scratched his head a bit at new water bottles for both girls, I reminded him that these purchases will be well worth it. Drinking water all the time is E’s life, after all.

E loves to be outside during the summer and we don’t want her to miss out on key experiences of childhood. We keep her inside during the hottest parts of the day, but we also compensate for fluid lost through sweating by giving her extra fluid throughout the day. We aim for at least 100 mLs of extra fluid on top of her 1800 mL/day goal. When she’s running around and playing, drinking extra water is natural to her, just as it is to you and me. But when we need a fun summer treat, we make popsicles and smoothies. We usually make Koolaid popsicles in whichever color E and M decide they want. We have our own popsicle molds and I weigh the liquid in one section of the molds before we pop the full tray in the freezer. Last summer we started making smoothies at home in addition to the popsicles. M and I enjoy blueberry banana smoothies, but E LOVES cantaloupe smoothies! This summer melon smoothie recipe is our favorite, and she can’t wait until Grandpa has cantaloupes from his garden to share. I was not a big fan of fruit growing up (veggie lover here), so making smoothies at home is a big win for me on all fronts: I’m trying new fruit (mango was the new addition last week), my girls get healthy snacks, and E gets fluid for her fluid goal. We used our big blender last year to make all our smoothies, but in May my husband surprised me with an immersion blender. Ours is a Kitchen Aid 2-speed hand blender, and I love it! I can quickly wash the blending arm and set it out to dry and we can make smoothies again later in the day or right away the next day instead of waiting for all the pieces of our big blender to dry. The lid for the blender jar is very convenient as well. I’ve put the lid on and set leftover smoothie in the fridge for the next day and didn’t have to worry about dirtying any other glasses or cups. I know there are lots of different types of blenders out there for smoothie making, but I thought I’d share what is making my life a little easier. This week’s new smoothie ingredient is peaches, and next week’s is kiwi. As long as we stay away from grapefruit, we’ll be fine. As most of you transplant parents know, grapefruit doesn’t play nice with anti-rejection meds.

In March I wrote a post detailing our headaches with our insurance company denying coverage for two different injections E received in November. Well, I’m happy to report that 6 months later(!), we received word that those denials were officially overturned. As I mentioned, it took me, our nurse coordinator, and a financial coordinator to assemble records to submit to the insurance company to set matters straight and establish that the injections E received were medically necessary. Then one of E’s nephrologists had to get in contact with the insurance company’s doctor several times to explain why the injections were necessary. There’s got to be a better way for doctors to submit claims to insurance companies and for those doctors to submit evidence of medical necessity right away. The current system of denying coverage to the patient, informing the patient about the denial months later, and then asking the patient to assemble records and coordinate with doctors to submit evidence is such a long process. If doctors could submit reasons for treatments with their claims right away, then insurance companies would have all the information they need to take care of claims on their end and the process would go a lot smoother and more quickly, in my opinion.

E’s neutrophil counts have been up and down the last couple months, so we’re still riding things out to see if a medication change is needed. Unless her upcoming July labs are drastically low, I suspect we’ll discuss this topic in depth at E’s next routine check-up with her transplant team in August. To be honest, it makes me nervous watching those levels for a couple of reasons. The first obviously is that a low neutrophil count for E is dangerous, as I’ve already discussed. The second is that if a change in medication is necessary I hope we’ll be able to get that new med without complications from the pharmacy. I’m glad to say that I’ve only had one problem with CVS Specialty Pharmacy since January. This latest problem in May seems to be a problem with their automated system and customer service. I ordered one of E’s anti-rejection meds on a Saturday through her online patient portal and selected the day I wanted the medication delivered to our house, which was a Tuesday. We regularly get expedited two-day delivery. The system sent me a confirmation of the order that same day and I received a confirmation of shipment on Monday. On Tuesday I received a message stating that our delivery would be delayed until Wednesday. Then I received another message stating that the medication would be delayed indefinitely until I called the CVS customer care team. A delay in delivery is a problem because I have to make sure I am home to sign for the delivery and we were expected at appointments on that particular Wednesday. I called CVS to see what in the world was going on, and was told that my request was received too late in the morning on Saturday to get the medication to us by Tuesday. But I could create an account on the website of the commercial shipping company CVS uses, leave directions for the delivery driver if I wouldn’t be at home in time for delivery, and ask the driver stop at a different time. I was definitely annoyed at the cryptic messages from CVS and the explanation for the delay, but felt like I could deal with the solution just fine. But what I then learned from the shipping company’s website is that you cannot specify a change in directions for delivery if the package to be delivered is medication OR that package needs a signature. I can only give specific delivery directions to a driver if I’ve already missed one delivery. Frustrating. So, I ended up hurrying home from our Wednesday appointments and received E’s med when it arrived. I also told the CVS customer care rep how unhelpful the email messages about the delay were. I’m continuing to speak up about any problems we encounter with CVS.

In my post about pharmacies, I wrote about appreciating the little things in life like going to the pharmacy of your choice. Recently, I realized I find joy in another absurd little thing – finding brand-new unused syringes and medical supplies tucked away in cupboards in my house. 🙂 We still use syringes to give E all her meds through her G-button. She probably is old enough to take pills by mouth, but with her very sensitive gag reflex, we are content to keep giving meds this way for a few more years yet. Her G-button is a security blanket for all of us in that we can give her fluid boluses when she starts to get dehydrated, and we still routinely use it most days for one bolus. Having a button is so normal for E and she really owns it, so we don’t have problems there. The problems are making sure we have enough adults on hand to care for E that know how to use and change her button, and that we have enough supplies on hand for both her button and her meds. G-button kits like E has cost our insurance around $450 and we can only get one kit per quarter. So if E breaks a button, we have to have a spare on hand, go to the surgery clinic at the hospital for a new one, or order one and pay for it out-of-pocket. Thankfully, we’ve never had to order one out-of-cycle, and we’ve always had a spare on hand. We’ve also had great service from our home health companies for ordering the kits and supplies we need. Since the kits and supplies cost so much though, I try to only order exactly what we need. Therefore, it was awesome to find some spare med lines, bolus connectors, and bolus syringes tucked away in one of our cupboards at the beginning of the month. We regularly wash and reuse the lines, connectors, and tubes, so these spares were from previous kits where only the button had been used. When a line or tube gets to be worn out, we throw it away and replace it with a spare. So I did a happy dance when I realized we had more spares than I thought we did! The same goes for syringes. We use 8-9 syringes of various sizes each day for giving meds. That is much less than we used to use before and right after transplant, but it still amounts to quite a lot of syringes. (This is also one of the reasons why I spend more time washing dishes by hand than I would like.) We prefer to use Baxter Exactamed syringes, as they’re durable, fit all the bottle stoppers on E’s medication bottles, and have tight-fitting caps. But, those Baxter syringes are expensive. We’ve ordered packs of syringes several times, and then just wash and re-use the ones we have until we can no longer read the dosage lines on the syringes. So, imagine my delight when I found not one but two bags of brand new syringes stored away by my husband in different cupboards! Truly friends, it’s the little things in life that bring the most joy. And when you’re a Transplant Mom, you live for those little things!

M and E were excited to take our first hike of the summer at our local forest. E had her water bottle and the trail map packed in her hiking backpack.
E loves to be outside and is much more adventurous now that she’s older. Here she and M are running through the sprinkler in the backyard.

Choosing Joy

A lot of what I’ve shared here as a Transplant Mom so far probably seems like complaints. Some days are so frustrating and feel so unfair that I just want to scream at the top of my lungs. There are times when I still ask why our family got sacked with a complicated disease that necessitated a transplant for E. (Thankfully, these times are now few and far between, but they still occur once in a while.) There are definitely days when I see or hear parents of perfectly healthy kids crying out with woe, asking for prayers as their toddler battles a normal ear infection or a cold, and I want to shake them. In my head I say, “You don’t know how good you have it! I would give anything for E to be a perfectly healthy kid. I would trade all the memories I have of holding her down during a picc line insertion while she screamed, watching her have seizures, or doing dialysis for your kid’s ear infection.” Instead, I ignore the parent or offer sympathy and say that it could always be worse. It may seem rough now, but their kid will get better soon.

One of the interesting things about parenting a chronically ill kid is the perspective that accompanies it. That’s what I really want to talk about here. Perspective is everything. Parents like us soon come to realize that we can’t complain about every little setback because there are scenarios out there that can be much worse for our kids. We learn that we can’t measure our kids’ success by healthy kids’ achievements, and we can’t always measure growth by prescribed milestones at the pediatrician’s office. A very different definition of the word “normal” applies to each family of a medically fragile kid too. I used to try to imagine what our lives would be like if E had been born healthy, but now I realize that’s a fruitless exercise. Meds, doctor’s appointments, labs, medical jargon and the like are part of our lives now and always will be. It’s weird how quickly someone can settle into a life like this, but we do and we go with it. Many times, the concerns parents of healthy children have about their children baffle me because I’m so used to dealing with potentially life-threatening situations. That’s my life, that’s my normal.

So, things could always be worse. That’s a key attitude of perspective I’ve gained since becoming a mom. After I freak out a little over a new hiccup or vent my frustration to my husband (or my mother-in-law) about some insurance problems, I remind myself that we actually have it pretty good. It is very frustrating to deal with everything we go through or have gone through, but we are also very blessed. E spent just one day shy of a year on peritoneal dialysis – not several years. We didn’t have to wait months and months on the transplant list for an organ to become available for E. She was able to get a transplant from a living, related donor and her surgery went exactly as planned. Except for gut bugs and anemia, she’s stayed pretty healthy since transplant, and the secondary conditions caused by her kidney disease have drastically improved (e.g, heart disease). After speech therapy and a lot of help from dietitians, E now speaks and eats as well as healthy kids. If you didn’t know she had a feeding tube, you would never be able to tell by looking at her. And only trained eyes would notice the little tell-tale scar on E’s neck that indicates something else is going on with her (her upper port-a-cath scar). E has had a rough go of it, but things could have gone so much worse for her.

Watching E run around outside over the past few weeks was the catalyst for my recent reflections on perspective. This time of year five years ago, we brought E home from the NICU and were doing peritoneal dialysis at home. That time in our lives was so indescribably hard that my husband and I both recently admitted we block out the memories of it. Transplant and a “normal” life seemed unreachable then. Now, that journey to transplant is just part of E’s and our family’s story. For whatever reason, we had to go through all of that to get here. We thank God for modern medicine, a successful transplant, and allowing E the ability to eat, speak, and walk on her own. E may be immunocompromised, but she is healthy in all these other ways. We see the parents of other kiddos with conditions that prevent them from communicating, eating on their own, or moving independently, and we marvel at their strength. Those parents do exponentially more than we do and selflessly deal with their own versions of normal. They are the parents I admire most.

A last note about perspective: it took me a while to get to an attitude of gratitude and to remember that things could always be worse. I had to process and work through a lot of anger, frustration, and sadness, even amidst my joy at being E’s mom. Sometimes when you’re lost in the trees, it truly is hard to see the forest and you take things for granted. I say this because I’ve relied on perspective so much more in the last year since we lost our third daughter, V, in May 2020 to the same kidney disease E was born with, ARPKD. With E, I never really entertained the thought we might lose her because that just wasn’t a possibility in my mind. E had a lot of odds stacked against her, but she is a fighter and she always pulls through. Even so, all I could think about leading up to V’s birth were the complications and long hospital stays E endured and I was angry. I didn’t want our family to go through all of that pain again. After V was born and we saw how much more severe her disease was than E’s, it became crystal clear just how many things had to go right and did for E to make it. I realized how lucky we would have been if V’s disease had presented in ways similar to E’s. Isn’t that weird? To feel lucky for the disease complications that previously caused our family so much hardship? That’s perspective in action. I would gladly have been a Transplant Mom to two transplant kiddos. But it wasn’t meant to be. V is enjoying her heavenly home now. We miss her terribly, but we are grateful for the time we had with her. So, what I’m trying to say with this post is remember to have perspective. Be sad, angry, or frustrated as you need for a time. Then remember things could always be worse. Find the good amidst the bad. Our lives are super frustrating at times; I complain about things and need to vent. But every day we choose joy at being the parents of our three wonderful girls. And every night when I tuck E in, I choose joy at being a Transplant Mom.

My joy: my three beautiful girls.

Advice for Families About to Go Through Transplant

Now that we’ve gone over how non-transplant families can interact with a family going through the transplant process, I’d like to share some advice for families about to go through transplant. Our official transplant education at our daughter’s transplant center was top-notch, but it still didn’t cover everything. So here’s what I want prospective transplant families to know.

Before transplant:

Get your ducks in a row. Even if you’re waiting for the call that an organ is ready and you don’t know when surgery will be, get as much in order ahead of time as possible and rest when you can. You’re going to be incredibly busy and you probably know hospitals are not good places to get rest. Arrange childcare for other children, plan how you’ll let your boss know you’ll be off work, and do any FMLA/PTO paperwork in advance. Make a few meals you can throw in the freezer. You might even work out which family members or neighbors can check on your pets. Once you get the green light that transplant is a go, things will move fast. You’ll be so glad you’re prepared.

Don’t be shy about telling people they can’t come over (this goes for after surgery too). Let people visit who are truly helpful and supportive – those in your most trusted inner circle. You don’t need the stress of visitors who aren’t considerate of what your family is going through. Some of the best advice my husband and I got when we went to our birth education classes when we were expecting E was about visitors and it absolutely applies to this situation as well. Our instructor told the fathers to be the gatekeepers for visitors: if a visitor would stress a mom out after delivery, it is the partner’s job to protect the mom’s health and sanity by putting that visitor off until a later time. So, protect your family’s health and sanity by knowing your limits with visitors. All you need to say to someone is, “Now’s not a good time.” If the prospective visitor truly loves your family, they won’t be offended.

Have a designated channel of communication for updates about your kid. All of your family and friends are going to want to know how things are going. But one of the last things you need is your phone blowing up with hundreds of texts, missed calls, and voicemails that you feel you need to address. Decide ahead of time how you’ll communicate updates. Maybe one parent will send texts to another family member and that family member will get the word out via social media. Or establish group text threads for each parent’s respective extended families. Some hospitals allow parents to set up Caring Bridge websites and the like for families to post updates. If that’s something you want to do, decide which parent will write posts. Lastly, if you’re uncomfortable with family and friends sharing news about your kiddo’s progress in any fashion, say so. You have the right to control what information about your kid is shared and with whom that information is shared.

E playing with her Dad the night before she was admitted to the hospital for her transplant.

During transplant:

Don’t be afraid to ask questions and speak up for your kid. You are the expert on your child, even if you’re not an expert about transplant. If something doesn’t feel right, say so. If you have questions, ask them until you get answers you understand. If you don’t agree with a treatment plan, ask for alternative options. If a nurse, CNA, or therapist doesn’t have a bedside manner that you feel works for your child, ask to speak with the charge nurse. Be honest about your concerns and ask them for a different nurse or CNA the next day. Likewise, if you have a really great nurse, ask for that nurse to continue your care. My husband loves to joke about how my most protective Mama Bear instincts were brought out during E’s transplant by one Child Life Specialist. E was 16-months-old when she had her transplant and she wasn’t verbal at all. On top of this, we didn’t want her playing with a lot of communal hospital toys due to potential germ exposure, even if those toys are routinely and carefully cleaned. But we had one persistent Child Life Specialist who just wouldn’t leave us alone and wouldn’t take no for an answer when I firmly told her we didn’t need or want toys for E. We had everything we needed. Finally, I told our nurse we absolutely did not want any Child Life Specialists in E’s room bothering us. We also only allowed the minimum physical therapy for E since she wasn’t walking yet and felt the physical therapist didn’t understand where E was in her development. I do not feel one bit bad about speaking up for E in these situations. That’s what she needed from me. (And by the way, contrary to what my husband says, I don’t hate all Child Life Specialists. We actually know and like two really great ones at E’s Infusion Center.)

Be prepared for unforeseen complications. Complications could occur both before you leave the hospital and once you get home. No one knows exactly how a patient’s body will react to a transplant. In our case, E’s surgery went swimmingly, but her surgeon told us beforehand to prepare for the possibility that she wouldn’t be able to close E all the way. Thankfully, E’s new kidney worked right away, the surgeon was able to close E, and E’s incision remained infection-free. But once E was stable enough to move from the PICU to the general pediatric floor, we had trouble restarting her feeds and she vomited uncontrollably. It took several days to find the right balance of fluid and calories before the vomiting stopped, and E’s doctors told us the only reason they were keeping her in the hospital was to make sure she was getting the fluid and nutrition she needed. Once E was finally discharged after transplant, she ended up back in the hospital for an overnight stay two weeks later thanks to a concerning lab result. Thankfully again, the concerning result turned out to be lab error, but it was still an unforeseen complication.

Never stop praying. My husband and I have active faith lives and believe you are never truly alone if you pray. But sometimes it is hard to keep going in trying times, so let other people pray for and with you. Our parish priest came to the hospital to pray with us while E and her aunt were in surgery. That was such a comforting thing for us. We also found strength and support from lay ministers at the hospital. One man came to visit us who had also had a daughter in the PICU as a toddler and another lady happened to be a member of our parish community. You never know where support may show itself. If you’re not religious, that’s ok. It might still help you to talk to a hospital chaplain though. We’ve met quite a few hospital chaplains of various faiths and have found them all to be down-to-earth and wonderful listeners. They are often also trained counselors. So even if you’re not religious, a chaplain may offer you a sympathetic and supportive ear.

E three days post-transplant, still in the PICU. She’d just gotten her oxygen off and had her first bath.

After transplant:

Post-transplant IS very different from the pre-transplant world. Many people will offer you advice on how to manage all the different appointments, medications, labs, and the like after transplant. But do what makes the most sense for your family. If you already have a system for appointments in place, awesome. Go with it. If you need ideas for new ways to manage meds, try one suggestion and if it doesn’t work, modify it to fit your kiddo and family. We have a nurse friend who gave us ideas on how to manage E’s transplant meds based on her experience with her husband’s transplant meds. We ended up modifying her advice to fit our family. For example, we separated medicines into different plastic snack bags and labeled them with the time they were to be given each day. Our friend’s husband separated his medicines by using colored snack bags. Still other people use pill boxes. Find what works best for your family and be open to changing your routine to fit your family’s needs over time. Meds, labs, and appointments will consume much of your lives for the first several months or so after your child’s transplant. After that, everything will taper down to much more manageable amounts – e.g., twice daily meds, labs once a month, appointments once a month, etc.

Divvy up responsibilities between parents. Both should know how to do everything, but neither should be responsible for doing everything. For example, when E came home from the hospital, my husband would make all her meds and formula, and I would give all the meds and deal with her feeding pump (filling bags, changing them out, and setting her pump). I interacted with E’s home health nurse during visits and took E to all her appointments, but my husband and I both gave baths and monitored E’s incision. My husband pays all E’s hospital and insurance bills, while I order meds from the pharmacy, make all calls to insurance, and interact with our social worker. Now that E’s older and she’s off her feeding pump, I make and give meds most of the time. One of the best things we did after E came home from the NICU was to write out her detailed daily schedule with doses and times for each med. We then made a list of the names and contact information for all E’s doctors, nurse coordinator, pharmacies, therapists, and social workers with our emergency contact information. We keep two copies of these documents in our home at all times – one copy of each document hangs in our kitchen and one copy of each is kept in a binder we send with E whenever she spends the weekend with her grandparents. Keeping multiple copies of these documents ensures that my husband and I have easy references to information in case we forget something or in case one parent needs to cover for the other. It also gives us peace of mind in case something happens to us and someone needs to step in and care for our girls. I’m sure detailed documents like these would also be super helpful for transplant kiddos who go to school or daycare.

If you’re a single parent, ask your social worker what programs your family might qualify for that could provide you with some in-home help, even if that’s temporary help. For instance, maybe your family qualifies for home health and a home health aide. Maybe your family qualifies for rides to appointments. Maybe your family qualifies for respite services. You won’t know what resources are out there until you ask.

NEVER be afraid to ask for help from your social workers or transplant office when it comes to pharmacy and insurance bills! Or when you need help navigating the complicated world of Medicare if you have a kidney kiddo like we do. That’s what these people are there for and they are life savers.

Lastly, never be afraid to call your transplant nurse coordinator, your transplant office, or pediatrician’s office if your child exhibits symptoms that concern you. You’ll be given lists of signs and symptoms to watch for, but if you’re not sure, go ahead and call. You’d rather be safe than sorry, and I’m sure your transplant coordinator or pediatrician is used to getting calls like yours. Everyone wants your kiddo’s transplant to be successful. Any time I had a concern about E during the two years or so after transplant, I always called her nurse coordinator first to let her transplant team know what was going on and ask how I should proceed. Now I am confident enough recognizing certain symptoms in E that I know who to contact first when we have concerns about her.

In the end, know that transplant is hard – but you will get through it. You and your kiddo have already made it this far and that’s half the battle. You can do this.

Going home, 11 days after transplant. One of my favorite pictures of E.

How to Talk to a Transplant Family about Transplant

Recently, I was asked to be part of a support group for parents of kidney kiddos, so I’ve been reflecting a lot more on our family’s experiences – what we felt, what helped, what stressed us out, and what we wish could’ve gone a different way. Here is some advice I’d like to share with non-transplant families who might know a family about to go through the transplant process.

Don’t ask if the family is excited for transplant. That’s a weird and hard question to answer, and I would say it’s also an insensitive one to ask. I understand that you might be struggling to find something to say or that you might have completely good intentions, but just don’t ask this question. It’s not helpful in any way. Instead, ask the family (or future transplant kid) how they feel about transplant so they can say whatever they feel. When E’s transplant was imminent, my husband and I had quite a few well-meaning people ask us this question and we were always shocked by it. Yes, we were excited for the prospect at a more normal life a transplant would give E, but we knew the surgery is a complicated one that carries many risks for both the donor and recipient. In our case, we didn’t have just E to worry about – we worried about my husband’s sister too, who is E’s living donor. We also knew what other transplant families and medical professionals know but many outside the transplant community don’t – a transplant isn’t a cure for whatever disease or condition that caused the transplant to be necessary. A transplant is a treatment and carries its own side effects. Then there is the fear of making it successfully through the surgery only to have the patient’s body reject the transplanted organ in time. We transplant families live in fear of rejection, even if that fear is tucked away into a corner of our brains most of the time. So rather than being excited, our family felt a mixture of hope and fear leading up to transplant.

Another reason you shouldn’t ask a family if they are excited for a transplant to happen is that many patients don’t receive organs from a living donor. Many receive organs from a deceased donor. I can’t speak from personal experience on this front since E’s transplant came from her aunt, but we do have a dear friend who received two life-saving transplants from a deceased donor. He is so grateful for the second chance at life his transplants gave him, but he also had to work through grief for his donor, his donor’s family, and for the part of him that he lost. For the patients and families who receive transplants from deceased donors, I imagine it’s hard to be “excited” when they know how much another family hurts from losing a loved one.

Something else to avoid saying to a family soon to go through the transplant process is “I know how you feel” followed by whatever situation you’d lived through that you think must be comparable. Again, I’m sure you have good intentions and just wish to express your sympathy. BUT, unless your family has lived through the transplant process, you do not know what the transplant family is going through or how they feel. Even if you’ve lived through a serious medical condition, you can’t know what the transplant process is like unless you’ve lived it yourself. What I’ve found to be helpful is when someone has said a version of this to me: “I can’t imagine what you must be going through.” Honestly, sometimes that’s all that needs to be said.

You might wonder what you can do to help a family before, during, and after an organ transplant. That’s great! Please listen when I say the best way to offer help is NOT to ask the family, “How can I help you?” or “Can you tell me what you need?” A family going through transplant already has more than enough on their minds to worry about, and you asking them to identify specific needs so you can help them just amplifies the stress in most cases. And speaking from experience, sometimes a family doesn’t know what will help them the most until the transplant happens. The best advice I can give for anyone wanting to help a transplant family is this: offer them food or to run errands for them. Some of the most helpful support we got during E’s transplant was from friends and family who just made food and dropped it off at our house or who sent us gift cards to order carry out. Still others sent or dropped off snacks we could grab when we came home or throw in our bags when we went back to the hospital. During several of our family’s hospital stays, some of my very best friends have offered to go to the grocery store for us, do our laundry, or even mow our lawn. They wanted to do whatever tasks they could take on that would allow us to spend more time at the hospital.

If the COVID prevention measures ever go away, I would also recommend offering to visit a transplant family when they’re ready. I am in no way advocating for interruption of a patient’s or family’s recuperation time. Please be mindful that recuperation is stressful and scary and the infection risk is real. But sometimes the caregivers of a transplant recipient need a respite from the constant vigil kept at the patient’s bedside. During various hospital stays, I’ve had friends come to the hospital to take me to lunch for an hour while E’s nurse stayed with her. We had family members stay with E for a hour or so at a time during her transplant recovery so we could go home to shower, get something to eat, or take a nap. And lastly, we had friends and family just come keep us company for a little while to help us take our minds off our worry. But remember to ask before you plan to visit and don’t be offended if the answer you get is “I’m sorry, but this isn’t a good time.” The transplant family knows you want to support them, and there will be other times when you can see them that might be safer or less stressful for them.

Now some advice for interacting with a transplant family after the transplant. Remember that the transplant family is figuring out their new normal. A transplant recipient has a lot of medications to take, follow-up appointments to go to, labs that need to be taken, and potentially even therapy to get through. It may be a while before anyone in their family is comfortable receiving visitors at their home or up to going out. Be respectful of their time commitments and choices to stay home, as each healing process is different. Please also understand that their attitude toward sickness prevention will change, as they need to protect the patient’s transplant. Please don’t be upset if the transplant family doesn’t attend a celebration or social event you host. They might not feel comfortable attending a crowded event. Or please don’t be offended if there are new rules established for visiting their house. We regularly enforce the rule of not visiting our house during flu season if you don’t get a flu shot. We are also not shy about asking if friends and family have gotten their shots. And I would hope that by now, our family and friends know that many times we aren’t in attendance at events not because we don’t want to be there, but because we are looking out for E’s health by not exposing her to other people’s germs.

Lastly, give the transplant patient and family some time to process and work through the myriad thoughts and feelings they might have after the transplant. If they want to talk and vent, let them do it. But if they want to talk about something completely different to take their minds off the overwhelming thing they’ve just gone through, by all means, help them in whatever way you can. Maybe this is bringing up a silly book or joke you read, showing them a goofy viral video, or even just discussing their favorite sports team’s recent performance. I promise that if you are truly considerate and keep the transplant family’s needs ahead of your desire to help them, you will help them when all’s said and done.

E right after she received her kidney transplant, November 2016. So many thoughts and feelings accompanied this photo then and still do now.


We always talked about homeschooling, but we never thought we’d actually do it. E was supposed to go to parochial school, and then COVID hit and we decided to keep her at home to keep her safe. Now here we are, two weeks away from being done with our first year of homeschooling and we’re planning to continue it. There are many benefits of homeschooling that we like, such as having a flexible schedule, tailoring our girls’ education to their interests, and using different teaching methods. But there are definitely many other benefits that I only realized fully after speaking to a friend about why we’re continuing to homeschool. Those benefits include the following:

We don’t have to adjust med times for school or teach school staff to give meds. We would have had to shift E’s med times earlier in the day if she had gone to school, and we would have had to teach faculty and staff to give her meds since the school we planned to send her to didn’t have a full-time nurse on staff.
Related, I don’t have to worry about something happening to E’s med backpack at school – whether that’s meds being spilled, being left out in the heat, being forgotten, or curious little fingers going through it.
We don’t have to worry about E bringing home contagious germs from school!!!
We don’t have to worry about E meeting her drinking goals at school. I worried that E’s progress in drinking would regress with going to school because she would be too busy having fun that she would forget to drink. And I couldn’t expect a teacher to police her all the time when they would be responsible for other kids as well. I worried that we would have to resort to multiple boluses a day in order to meet her fluid goal.
We don’t have to worry about making sure her teacher applies sunscreen for recess. One of E’s anti-rejection meds causes an increased risk of sunburn, therefore increased risk of skin cancer. So she always needs to wear sunscreen or sun protection when outside. This is one of those little things E needs that we are so accustomed to, that it fell off my radar of things I would need to tell E’s teacher. It wasn’t until explaining to a friend all the things I do for E that I realized something so little could be time-consuming for a teacher with 17 other students to monitor.
We don’t have to worry about bathroom incidents when gut bugs happen. While E is completely potty-trained, she sometimes still needs help in the bathroom when she has a gut bug.
We don’t have to worry about missing school for appointments and hospital stays! While the principal of the school we intended to send E to said that the school would be completely accommodating of E’s medical appointments, there still would have been assignments and class experiences she would have missed and needed to catch up on. Now we just work our school schedule around appointments.
We don’t have to worry about medical alert bracelets and allergies quite so much. I still want to get her one for when we travel, but we would’ve had to get E a medical alert bracelet for school in case of an emergency. A medical alert bracelet would let first responders and medical personnel know about E’s transplant status and her allergies to the class of drugs known as NSAIDS.
We don’t have to worry about her g-button coming out. While having a g-button feeding tube is normal for E and second-nature now for the rest of us in the family, we always worry about the button coming out when E is under the care of someone outside our immediate family. The button coming out isn’t as big of a deal for us anymore now that E is a big girl, but if it gets pulled out in play on accident, it is a shock and does cause E some pain. Putting the button back in is easy if you know what you’re doing, but you need to be trained how to do it, and there is a very small window of time to get it back in before the hole in E’s tummy where it goes closes back up. If that hole were to close, E would have to have surgery to have the g-button put back in. That’s something no one in our family wants. E is very good at protecting her button, but kids are rough, and sometimes it comes out while she’s playing. I have had to rush home from work in the past to put her button back in and I would have hated the trauma for everyone involved if I would’ve had to rush to school to help with a button incident.

Sometimes I worry that E will miss out on the formative “school” experiences – like riding a bus, going on field trips, playing with friends at recess, putting on school programs, etc. But then I think about all the times I’ve seen her face light up when she learns an especially fun new fact or how proud she is to have mastered writing her letters and I’m so glad we’re in a position to homeschool her. I know homeschooling is a common alternative to regular school for transplant families and that it works well for many of us. But I also know that there are many transplant families who aren’t in a position to homeschool. They have to do everything I listed above and more to work with their schools to get their kids the education they need and deserve. My hat is off to all those families making in-person school work for their transplant kiddos.

E’s first day of homeschool preschool. She had to wear one of her favorite dresses, of course!

It’s Always Something

It’s been a while since I’ve written a post, but that doesn’t mean nothing’s been happening. It always seems like we have some new fire to put out or some new obstacle in E’s path to tackle or overcome. The past few months we’ve dealt with both health issues and insurance issues. I mentioned to my husband that just when I think we’re in the clear something new pops up and he likened it to the old Bugs Bunny cartoons when the characters beat each other up – one arm goes down in the fight, but then a leg flies into the air and nothing is ever still. A silly comparison, but a very appropriate one at the same time.

In November, E had some drastically low neutrophil (white blood cell) counts that if left untreated, could have put her in the hospital. (As most of you know, white blood cells fight infections.) Since E is immunosuppressed, she really needs her neutrophils to work at top-level. Her team of nephrologists decided to prescribe daily labs and injections until E’s level came back up to a safe number. E also had another round of low hemoglobin at the same time (anemia is a chronic battle for her thanks to her kidney disease), so she had to receive injections to boost her hemoglobin production then too. So for two weeks in November we took her to her infusion center every day to receive injections in her thighs. None of us know what caused her neutrophil level to plummet, but we breathed sighs of relief when all of her levels rebounded in December. We thought that was the end of this latest new hurdle to clear.

It amazes me that after everything she’s been through, E always says she wants to be a doctor or nurse when she grows up. Here she is in her first lab coat on Christmas morning.

In February, E had her usual 6-month check-up at her transplant clinic. While there, her doctor asked me if I’d start taking E’s blood pressures again at home, because her BP at the clinic was a little high, and her latest lab results indicated that her cholesterol was high. She said that she wanted to keep a closer eye on E’s BPs given her cardiac history (extremely high blood pressures thanks to kidney disease), and that we needed to implement a low-sodium diet for E. In August we had to implement a high-phosphorus diet for E to boost her phosphorus level. So, I was a little worried that things were starting to spiral out of control for us. My husband assured me that E’s high BP was probably just an anomaly since she was excited to be at the clinic, and that taking BPs regularly at home wouldn’t be a big deal. Sure enough, within two weeks her doctor was satisfied that her BPs at home were just fine. We now take her BP once a week and send a log of her pressures to our transplant nurse coordinator every month. As for the diet change, we introduced lower-sodium products to E’s diet and hope that these changes combined with the whole-grain foods she already eats to increase her phosphorus will contribute better lab numbers.

In March, E had yet another round of weird lab numbers – this time labs showed low platelets again. E’s kidney disease (autosomal recessive polycystic kidney disease, or ARPKD) also causes problems with her liver, so her liver labs are closely monitored. Because E had months of consistently low platelets, after the March labs, her hepatologist wanted her to go in for an out-of-cycle ultrasound of her liver and spleen to see if either of these organs were having new problems and causing the low platelet numbers. E’s transplant nurse coordinator reassured us that this ultrasound wasn’t something to worry about, but when a doctor orders unscheduled tests, we tend to worry a bit. So, I took E in for a detailed ultrasound of her liver and spleen at her transplant hospital and then went to see her hepatologist for follow-up the week after. The ultrasound revealed that E’s liver is doing ok although it is fibrotic (which we knew), and that her spleen has grown a bit more from last year. Her hepatologist told me that this ultrasound had good results. It didn’t show anything overly concerning to her and would be a good baseline for her to keep a closer eye on both the liver and spleen. And because both organs looked unchanged except for the growth of the spleen, it indicated to her that the cause of E’s low platelet numbers is probably one of her anti-rejection medications. So, she recommended a medication change to address the low platelet numbers. If that doesn’t help, then E will go in for an endoscopy to see if she has any varices that might be causing the low platelet numbers. Varices are enlarged or swollen veins. They are new to us, but are a common symptom of ARPKD and can be very volatile and scary. We are really hoping that the medication is indeed the culprit of the low platelets. E will go in for another detailed ultrasound of her liver and spleen in six months to see how both organs are doing.

March did bring us some good news in the ophthalmology department. E has a few problems with her eyesight due to being a preemie and she sees an ophthalmologist every six months too. This time at her check-up, we heard that her eyes are actually getting stronger from the patching we’ve been doing. Her doctor said that if we patch her left eye a couple hours every day for the next six months, it is possible she might not need her glasses anymore. That was good news for sure!

Now it’s April and we’ve come back full circle to issues we dealt with in November. E’s nephrology team decided to address some of her low lab numbers by changing the dose of one of her anti-rejection meds. The plan is to see if her lab numbers improve with this change. If they don’t, then we’ll switch one of her meds per the hepatologist’s recommendation and see if that new med fixes the lab numbers. Thankfully, this change went off without a hitch from the pharmacy. It just took some time for the team to decide what they wanted to do for sure. But unfortunately, we received word from our primary health insurance company that all the extra injections E received in November to boost her neutrophils and hemoglobin would not be covered because they were not deemed “medically necessary” according to the insurance company’s criteria. What is super frustrating about this is that we filed an appeal of the insurance company’s refusal to authorize these injections in November and thought we’d submitted all the information the company needed. Now, six months later(!), we are receiving a whole new round of denials. It takes me, E’s transplant nurse coordinator, and a financial coordinator from the transplant center to file all the paperwork needed to appeal one of these adverse decisions from the insurance company. We thought we’d successfully appealed one denial of the injections only to receive notice of a new denial two weeks later. When I called the insurance company about the latest denial, the representative told me that the insurance company didn’t have enough information from us from the November appeal in order to move the process along for us. If I wouldn’t have called, we would never have known what the problem was – neither we nor E’s doctor had ever gotten follow-up correspondence from the insurance company stating that more information was needed. So I’ve spent considerable time once again this month on the phone with insurance and corresponding with E’s transplant office to assemble all the records we need to satisfy the insurance company’s need for information about E’s health.

My best advice for anyone dealing with an insurance company is to never be afraid to call Member Services. Always take detailed notes, ask for the name of the representative working with you, and never be afraid to ask questions or ask for a supervisor. You are entitled to know what’s going on with your health plan. And don’t be afraid to ask for help if you don’t know how to find the information you need from your health insurance. In the past, if I’ve needed help navigating insurance, I’ve asked for help from one of our social workers. They’ve always been very helpful. If you don’t have a social worker assigned to you already, ask your hospital or clinic if there is a social worker on staff who could assist you. No one deserves to be in the dark about hospital bills! We are hopeful that between all of us working on E’s case that we’ll get her insurance denials successfully resolved – even if it takes us another few months.

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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