Viral Issues in Transplant Recipients

Just an informational post because the husband was having trouble coherently explaining this. 🙂

Solid organ transplant recipients obviously take immune suppressive drugs and that makes them more vulnerable to essentially everything that the immune system would usually fight. Viruses. Bacterial infections. Cancers.

A handful of viruses in particular tend to cause more trouble than others – mostly, the type that hang out in your body. A typical person is exposed to these viruses, often doesn’t develop any symptoms – or just mild cold symptoms, and then the virus lies in their body, dormant, for all time. Sometimes, even in healthy people, the viruses can be reactivated. Transplant recipients, because of the suppressed immune system, are more prone to viral reactivation. Also, if they weren’t exposed pre-transplant (obviously more common in kids than adults), their first encounter with one of these viruses can be troublesome.

This article gives a nice run down, if you’re interested in more detailed information using longer words:

We monitor Teddy for three of these viruses on a regular basis (technically, we monitor viral load). Epstein Barr Virus (EBV), Cytomegalovirus (CMV) and BK Virus (which doesn’t actually stand for something – it’s just the initials of the first guy who ever had it).

CMV. I don’t know what to say definitively about Teddy and CMV right now because we’re not entirely sure what’s going on. It looks like his CMV levels go UP every time he has another illness. That’s not ideal, but as long as it comes back down every time, it’s better than not coming down. One of the things that was going on when he was admitted in the spring was that his CMV level was pretty high. Since then, we’ve noticed slight bumps associated with other illnesses. The risks with CMV infection are numerous. Primarily, it can cause rejection. It can also permanently damage the kidney. CMV viremia (for simplicity’s sake, “viremia” would be “high” viral load – what he had in the spring) carries with it a fairly scary mortality rate. CMV is treated by lowering immune suppression and taking a fairly nasty antiviral medication called valgancyclovir, which really does a number on your bone marrow (making you very anemic very quick, at least if you’re Teddy).

EBV. I want to say it was the first year post transplant, T got EBV for the first time. There were a lot of other things going on, and he ended up getting a tonsillectomy and a CT scan – primarily because the biggest risk factor with EBV in an immune suppressed patient is development of PTLD. PTLD – the acronym that strikes fear in the hearts of transplant moms everywhere. PTLD is a pretty aggressive cancer that transplant patients get with an awful mortality rate. It’s pretty rare… but transplant moms are so far past “rare” already – I mean, peds renal transplants are ALSO rare. So at our house, we tend to refer to EBV as “the scary cancer virus.”

BK virus. I know the LEAST about BK because we’ve never had to deal with it. BK virus primarily affects the kidney – causing permanent damage and/or graft loss.


Blenderized Diet for Tube Fed People

I wanted to wrap up Feeding Tube Awareness week by talking about what we feed Teddy.

Most people with a feeding tube are fed a liquid formula.

I believed there was a better option.

First, we kept Teddy on breastmilk for as long as possible, and 100% breastmilk until he was 1 year old. Just like his siblings.

Then, I started him on solid foods. Just like his siblings.

Except Teddy got his food blended up into a liquidish form and put directly into his belly.

It’s entirely possible (despite what your doctors may tell you) to feed a person regular foods through their feeding tube.

Some families blend up whatever everyone else is having. I figure, I’m in 100% control of what he eats without having to worry about preferences or flavor… I’m stuffing him with super nutritious foods! He does not eat what the rest of us are eating. 🙂 (and we eat pretty good… I just prefer Teddy to have a more nutrition-focused diet while I’m still in control of it.)

It’s not super hard. It’s not a super lot of work. It’s not dangerous. As long as it’s blended smooth, it’s not going to get stuck in the tube. There are a million reasons doctors have for not recommending a blended diet, but the fact is that most of them just aren’t familiar with it, and the unfamiliar is scary.

“What if I want to try blended foods, but our doctor won’t let us?”

I chafe a little at this question, to be honest, because your doctor doesn’t have that kind of power.

When I made the decision to do this with Teddy, both his doctors and his nutritionist had been pushing formula for months and months. I asked them what they would recommend I feed him if he were eating orally. Would they recommend I put him on formula? Or at this age (1 year), would they recommend I start feeding him CKF-appropriate foods?

Then, after the answer to that was a bunch of stuttering and stammering, I calmly explained that I had decided to start feeding him regular foods through his tube. I didn’t ask. I didn’t open the floor for discussion. I just told them this was what I was going to do. And after a year of working with me… they possibly knew better than to argue, lol.

We went through three nutritionists after that. Bam, Bam, Bam. Then we landed with Susan, our current nutritionist. We were, at that time, her only patient on a blended diet, but she was willing to learn and follow our lead. 🙂 After a lot of initial uncertainty, she now brags about his diet to her fellow nutritionists (including our old ones, lol), and advocates for them to support other families if they show an interest in blended diets.

Feeding Tube Awareness Week

This week is ALSO Feeding Tube Awareness Week.

I thought I’d take a moment this week to talk about Teddy’s tube.

Why does Teddy have a feeding tube?

Kidney disease often makes you feel nauseous. Perhaps because of this, or perhaps for other reasons, babies with kidney failure often don’t eat enough. Additionally, Teddy had high-output renal failure, which is a completely nonmedical way of saying that he peed out waaaay more than he should, and his body would literally pee itself into dehydration. To counter this, he required more intake than a typical baby – about twice what a typical baby would get, actually. We tried without the tube for about a month (from NICU discharge at 1 month until he was about 2 months), but during that time, he was chronically dehydrated, he was not gaining weight (and ultimately started losing weight), and our whole day revolved around Feeding The Baby. Or Trying To Feed The Baby. And meds. Forcing Meds Into My Baby. Forcing Breastmilk Into My Baby. Constantly constantly constantly stressing because he wasn’t taking in enough. When our doctor called to suggest it was time for a feeding tube, I agreed basically immediately (much to her surprise, lol). I don’t regret for a second.

Sometimes I wish we’d started off with the tube right away… but I’m ultimately glad we tried it without first. We tried. We failed. But we tried.


Why doesn’t Teddy eat orally now? Isn’t everything “fixed” since his transplant?

Teddy never really ate orally. He continued to use a bottle part time for a few months after his gtube was put in, but ultimately came to rely on the tube more and more. Ultimately, I don’t remember when but it was well before he turned 1, he stopped eating orally altogether, and actually developed a pretty intense oral aversion. Kissing him on the lips caused him to gag. Putting toys to his mouth caused him to gag.

He was also vomiting basically continuously during this time. (He’s had very very few days in his life where he hasn’t vomited – and most of the days with no vomits have been days he’s been on TPN – IV nutrition – while letting his gut rest.)

So… Oral Aversion.   Weak Mouth Muscles.     No recollection of how to handle food in his mouth.     Food is legitimately scary to him.

He’s made a LOT of progress since transplant. He is feeling better. He WANTS to eat. He has mostly figured out HOW to eat. He doesn’t gag any more. He puts everything in his mouth. (toys, I mean) But some textures and flavors of foods are still just too much. And some/many foods, he just can’t physically chew and move around in his mouth.

PTLD and Tonsils

When Teddy’s nephrologist said a few months ago that she wanted to take out his tonsils at some point because they were large (not because they were enlarged, or growing, or anything like that – just because they were large) and they make her nervous, I was kind of not on board with that. Her concern is PTLD, which I’ve blogged about before. It’s the stuff that haunts my nightmares. They feel Teddy might be at a greater risk for PTLD because of his congenital immunodeficiency, and of course peds transplant recipients are at a higher risk to start with. PTLD can often start in the tonsils, so they (and his lymph nodes) are something we monitor pretty closely.

I sat down to do some research on PTLD and enlarged tonsils and here’s what I found:

The goal of this study was “to recognize adenotonsillar enlargement in those children at risk for PTLD, thus allowing for earlier diagnosis and treatment of this organ-threatening and life-threatening disorder.”

Conclusions: Adenotonsillar enlargement in the post-transplant population appears to have greater significance, as a marker for EBV hyperplasia and PTLD. When identified either by symptoms or physical exam, plans for adenotonsillectomy should be emphasized. Unlike healthy children who may be observed for regression, pathologic examination of adenotonsillar tissue is necessary to identify early lymphoproliferative disorders.

So… enlarged tonsils are more significant in post-transplant kids, and really can’t just be observed.

Gist of the first page is that PTLD can be difficult to diagnose because there are so many forms.  “in children, the lymph nodes of the Waldeyer’s ring and tonsils are very common target organs.”  Honestly, I didn’t stick with this article all the way through.

This was an interesting paper, though the survey included is of little use to us because Teddy is still a mostly nonverbal, nonpotty trained toddler who doesn’t eat orally.

Really, knowing that a biopsy is critically important to early identification of PTLD, and early detection is critical to treatment, is enough for me. It goes against my “God put those parts in there for a reason” ethic, but the reasons for proceeding are compelling.

Now with EBV active in his system, and the tonsils larger than they have been, I totally understand and agree with the plan to get them out asap.

What’s Working

I feel like I spend a lot of time talking about the bumps and not enough time talking about what’s working. Because it’s the things that aren’t working that occupy my time. But I need to focus a bit more on what IS working. So, let’s talk about what *is* working post-transplant.

– Motor skills. Teddy’s made HUGE progress in motor skills. I mean, he’s walking. He’s almost running. He climbs a wee bit. He still falls down quite a bit, but he’s making great progress.

– Erythropoietin. Teddy’s failed kidneys didn’t make erythropoietin. It’s a hormone that your kidneys make to tell your body to make red blood cells. Kidneys that aren’t working don’t make the hormone. So Teddy received weekly shots of a synthetic version of the hormone. We needed to continue the shots for a month or so after transplant, but were able to stop by about 6 weeks post. Yay! The Epogen really hurts going in, so we were very happy to leave this injection behind. Teddy’s awesome new kidney, Lefty, is making all the erythropoietin he needs.

– Iron storage. Teddy’s never been good at iron. He had to have iron infusions for a while. Post-transplant, he’s been on the max dose of elemental iron for his weight. Last week, we stopped the iron (to try to improve some of his other labs that are bad). This week, his hemoglobin was still right in the target range. Wahoo!

– Calcitrol. Calcitriol’s another hormone made in your kidneys (and your liver, to a much lesser extent). Vitamin D (the vitamin) can’t be used in your body. Your body converts it to the hormone Calcitriol. In your kidneys. (I had this link rattling around in my bookmarks – it talks about Vit D and how it becomes hormonally active.) You can give a person with kidney failure all the sunlight and cod liver oil that you want, but if their kidneys can’t convert the vitamin D to the hormone calcitriol, it won’t do one bit of good. So, Teddy had to take a synthetic version of the hormone calcitriol. (Notably, until the very end before his transplant, when things were really getting out of control, he never needed actual Vitamin D. His Vitamin D level was fine. He had plenty. His body just couldn’t use it, because it was unable to convert the vitamin into the hormone.) Teddy’s awesome new kidney is happily converting the Vitamin D into the useable form, the hormone calcitriol.

– Bone Health. Bone health is kind of complicated. Vitamin D (actually, the active form Calcitriol), Calcium, Parathyroid hormone, phosphorous, and a few other things all play a role. When you have a growing baby whose body can’t convert Vit D into a useable form, who has calcium levels that are variably wonky, who has very high Parathyroid hormone, who pees out his phosphorous… you have a growing baby who is growing kind of crappy bones. Many kidney babies get renal rickets – a form of rickets found only in the renal population. Teddy did not have issues anywhere near that bad – in fact, his bones are pretty OK. But NOW his bones have no reason to not be growing straight and strong. 🙂 (This is a reasonably decent discussion of the role these things play in bone health. I’ve seen better, but I can’t find it.)

– Pee. Teddy’s never had trouble peeing, but he pee was “poor quality.” Yes, his pee was criticized for being subpar. But now he has awesome pee. His awesome new kidney is able to hold on to essential nutrients like sodium, phosphorous, etc., that his old kidneys couldn’t hang on to.

– Filtering Blood. This is of course the big one. Teddy has a kidney that actually filters his blood. It takes the waste products out and keeps the good stuff in. Throughout ALL of the bumps Teddy’s had since transplant, this one has remained rock solid. His kidney has always, always done its main job of cleaning the blood. So, so amazing. Go, Lefty!

PTLD (or, last week’s Scary Talk)

PTLD scares me the most out of all of the potential post-transplant complications. That and all the other types of cancer he could get (for example, he’s at a much higher risk of skin cancer).

PTLD is Post Transplant Lymphoproliferative Disorder. It’s a type of cancer specific to transplant patients, frequently associated with Epstein-Barr Virus infection. Pediatric patients are at a much higher risk than adult patients (partly or possibly primarily because many peds transplant patients have not been exposed to Epstein-Barr Virus at the time of their transplant, but receive a kidney from an EBV-positive donor, or are exposed to EBV some time in their lives while immunosuppressed).

Then, evidently, because of his hypogammaglobulinemia (basically, parts of his immune system have been pretty low ever since we started looking at them) and possible functional antibody deficiency, he’s actually at an even higher risk for developing PTLD. Yay, him! 🙂

Mostly, we just monitor him closely for symptoms of EBV, and I’m supposed to get very familiar with all of his lymph nodes, and we’ll watch his tonsils closely, and a few other things, and if he gets it, the treatment is to reduce immunosuppression and hope it goes away. 🙂  I need to note – chances of him developing PTLD are still fairly low, in the grand scheme of things. I can’t quantify it – frankly, every study I’ve read has been unable to quantify it even in the general transplant population, let alone factoring in his immune issues.

But it freaks me the H out.

And it’s one of those transplant things that most people just aren’t aware of. Getting a transplant is a GREAT thing, and there are obviously more benefits than drawbacks (I mean, being alive and having a greater than average risk for cancers still beats not being alive, right?), but there are still a lot of scary stuff that come along with it.


If you want to read more about PTLD: here, here, and here.

More about hyopgammaglobulinemia: here, here, and here.

Medical Advice and Being Careful Where You Get It From

So I feel like this goes without saying, but I don’t think it does. Please don’t take medical advice from a blog. Not this blog, not any blog.

I try to always give sources when I’m making statements of fact about things, or when I’m discussing decisions I made, if I made them using medical studies or websites or book, I give the sources so you can do your own research and draw your own conclusions. (and if I ever don’t, please ask!)

I also do a lot of reading of blogs of other medical needs moms, and blogs on health in general, and it’s just appalling to me the amount of bad advice that’s out there, or authoritative statements made with nothing given to back those statements up.

If someone says “X is safe for everyone except if you have liver disease,” don’t just say, “well, my kid doesn’t have liver disease, it must be ok!” Use your internet to work for you – a quick Google of “X counterindications” might show that, in fact, X is not safe if you have liver disease, or kidney disease, or a seizure disorder. Or it could cause miscarriage. Then you’ll be super glad you took the 2 minutes it took me to perform that particular internet search, right?

If someone says “hand sanitizer is evil because it contains triclosan and triclosan is evil,” don’t just take their word for it. Again, a less than 2 minute internet search yielded the information that the FDA doesn’t allow triclosan to be used in leave-on products like hand sanitizer.

If someone says “don’t take fish oil if you’re taking immunosuppressants!” don’t just believe them, unless they publish a source for this statement. (Because studies available at the NIH website directly contradict this.) At the same time, if they said “absolutely take fish oil when you’re on immunosuppressants!” don’t just believe that, either!!

Most of us want our care providers to practice evidence-based medicine. But *you* have a part to play, too – you have to form evidence-based opinions. You cannot base your opinions on what you read on someone’s blog. Even if that person acts like an authority. Even if that person says they’ve done all the research. Even if you’re busy and tired and you think, “hey, this person says they’ve done all the research, I’ll just take their word for it.” Did they provide their sources? If so, look at them. If not, then you have no real reason to believe them in the first place. Be skeptical!! This is your or your child’s health we’re talking about!