Spilling the Beans on Pediatric Transplant Life

Month: April 2021

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.

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