Spilling the Beans on Pediatric Transplant Life


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.

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.

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