Wednesday, March 26, 2014

What Post-Transplant Life is Really Like

We've had a lot of questions recently about what life post-transplant for Max is and will be like in the future. A heart transplant isn't the final step in the healing process--it's the first. He's doing extremely well at the moment but as his parents, Jon and I are going to have to be very vigilant about so many aspects of Max's life as he grows up. The advantage to his transplant taking place when he's so young is that with all of these regulations we have to implement, he won't know any different. This will just be the way things are instead of having a life and experiences pre-transplant and having to readjust.

Organ Rejection

Organ rejection is a lifelong concern for Max because at any time, his body could try and build up antibodies to try and fight the foreign object inside of it. One of the medications he'll be on for life is a combination anti-rejection/immune suppressor and taking it is a balancing act. If he's on too much of this medication, it can make his body toxic, but if he's not on enough, he runs the risk of rejection. Since leaving the hospital, Max's dose has changed every time we've gone in for his clinic visits and had blood draws and it will continue to change as he grows.

The earliest warning signs of rejection all read as flu-like symptoms: fever, chills, body aches, nausea, coughing, or shortness of breath. Unfortunately, it's impossible to differentiate between rejection and the flu from the outside, which means that every time he seems to be getting sick, we have to go to the hospital immediately. And it's not just for the flu--it's for any kind of illness he might contract due to his suppressed immune system. Which leads us to . . .

The Sniffles and Other Illnesses

We have to be so careful about what germs Max is exposed to, especially during this first year and ESPECIALLY these first few months, because any kind of sickness could get him hospitalized. Max still has a diaper rash that developed when he was in the hospital and we and his doctors are keeping a close eye on it. We're doing everything we can to help manage it and thankfully it seems to be going away but Jon and I even have to wear latex gloves when we change him so we don't accidentally expose that sensitive, susceptible skin to our bacteria. Our transplant cardiologist warned us before Max was discharged that he's seen kids have to be readmitted to the CV ICU for diaper rashes and frankly, I'm kind of worried that his rash has been so persistent.

Max survived a heart transplant at only five days old.
We can't let a diaper rash take him out.

This concern about germs and illnesses is what's led us to be so cautious and have to basically quarantine Max for these first few months. Jon has installed wall-mounted hand sanitizer stations throughout our house, we're very diligent about hand washing, and we take extra precautions when we've been out in public, whether it's changing our clothes, showering, or wearing a mask for a while when we first come home. We don't want to do anything that could compromise Max's health so we try and prevent as much as we can, which leads us to . . .


As a transplant recipient, Max can never receive any live vaccines such as the MMR. Obviously, this means he is much more susceptible to diseases such as the measles. The concern for us, of course, arises because of how many people have been irresponsibly not vaccinating their children. As a result, there was a pertussis (whooping cough) outbreak in Colorado and a recent measles outbreak in New York. Both of these diseases are so easily preventable but it seems that too many parents have chosen to not vaccinate their kids.

It's long, but illustrates the ridiculousness of the anti-vaccine argument.

I might sound like I'm on my soap box, and you know what? I am. But I find the anti-vaxxer attitude to be so selfish. If you are going to live within a community, I think you need to adhere to certain practices for the health of the community. I suppose one could argue that I'm being selfish in wanting other people to vaccinate their kids because mine can't receive certain vaccines but it's not just Max--other transplant kids, pediatric cancer patients, and newborns are all unable to receive certain vaccines and not vaccinating kids that can receive them puts all the others at risk. The decision to not vaccinate is not medically founded, other than on one erroneous study that was discredited years and years ago. Vaccines don't cause autism and they protect us from disease. Without them, our world is seeing diseases like polio resurface.

You suck, Jenny McCarthy.
I mention vaccines because they will come into play when it's time for . . .


Max's medications and what immune system he has should be fairly stabilized by the time he goes to school. However, Jon and I obviously can't check all of the other students' medical records to ensure that they're up to date on vaccines. We also can't screen all the kids as they arrive at school each day to make sure they're not going to school while sick.

"You know what, you're all disgusting.
Everyone go home."

We're going to have to make sure Max goes to a school with a strict vaccination policy and that we have good communication with the school nurse so that if there is an outbreak of the flu or anything else, we'll be notified and we can get Max to his doctors to have him checked out.

The same applies to any after school activities in which he might want to participate and depending on his immune system, he might not be able to do things like contact sports. Also, as Max gets older, we're going to need to communicate with his friends' parents for when he plays at their houses, not only about if anyone has been sick recently but also because of Max's . . .

Dietary Restrictions

Max is going to have a lot of dietary restrictions when he's older due to his need for a low microbial diet. He'll need to be on the usual heart healthy diet (and probably be on cholesterol controlling medication by the time he's ten no matter what) but he also has a long list of additional restrictions.

Here are some of the things he can never eat:

Dairy: anything unpasteurized, deli cheese, cheese containing chili peppers or other uncooked veggies, cheese with molds (ex: blue, Stilton, gorgonzola, etc.), soft cheese (ex: brie, camembert, feta, etc.), powdered infant formula, cookie dough/cookie dough ice cream, probiotic yogurt

Back up, Jamie Lee Curtis.

Meat and Meat Substitutes: raw or undercooked meat (no steaks cooked less than well done), raw or undercooked eggs, meats and cold cuts from a deli, hard cured salami in natural wrap, smoked seafood (ex: lox), pickled fish, tempeh products

Fruits and Nuts: unwashed fruits, raw nuts, roasted nuts in the shell, non-pasteurized fruit and veggie juices, fresh berries, grapefruit (can interact with his medications)

Vegetables: unwashed veggies, fresh, non-pasteurized salsa found in the grocery refrigerator case, all raw sprouts (alfalfa, mung bean, etc.), salads from a deli

Soups: all miso products

Bread, Grain, and Cereal Products: raw grain products

Beverages: well water, cold-brewed tea made with warm or cold water, mate tea, ice from ice machines in public places

Desserts: unrefrigerated cream-filled pastry products, soft-serve ice cream/ frozen yogurt

Fats: fresh salad dressings stored in the grocer's refrigerated case

Other: raw honey, honey in the comb, herbal and nutrient supplement preparations, brewers' yeast (if uncooked)

Max can also never eat at self-serve frozen yogurt places, buffets, potlucks, or from sidewalk vendors. These all make sense due to the higher chance of spreading germs but it's something that probably wouldn't have occurred to us.

Deep down, I think we all know that sneeze guards are largely for show.
We also need to be very careful of food storage and prep in our home. In addition to the usual safe food handling practices like avoiding cross contamination and storing food at safe temperatures, we have to be pretty OCD about cleanliness: changing out dishcloths and towels daily, sanitizing EVERYTHING with a diluted bleach solution: counters, fridge, etc., and even washing produce that is going to be peeled, such as bananas, melons, and oranges.

We also have to be careful about leftovers. They have to be reheated to a safe level and disposed of quickly if they're not eaten within the next day or so after the food was originally prepared. Basically, we have to make sure our kitchen does not have any opportunities for bacteria to grow.

Basically, all of my time will be spent cleaning and sanitizing the kitchen.

The benefit of Max being so young is that Jon and I have the opportunity to implement all of these dietary adjustments for ourselves so that by the time Max is old enough, he won't know a different lifestyle. The list seems excessive but if you think about it, if we eat a healthy diet and follow safe food handling practices, that will take care of most of Max's restrictions. As for the foods that he can't eat, we'll just have to treat them like allergies.

Other Activities

Jon loves to garden and when we found out we were having a baby, he started to look forward to sharing that with our child. And he should still be able to--but now we have to be extra careful because of the various bacterias that could be in the soil. Gardening gloves are an absolute must and, depending on his immune suppressors, he might need a mask as well. Max also shouldn't be exposed to animal fecal matter which means that he has a free pass from cleaning up after the dogs.

The may look sweet, but they're full of lies.
And poop.

With all of Max's lifestyle regulations, our lives have had to change a lot. We knew that they would change just from having a baby but we've had to make even more shifts than we thought. And while we have to be really concerned about germs and Max getting sick, we don't actually want him to live in a bubble (except for this first six months to a year--doctor's orders). As Max gets older, we'll do what we can to help protect his health. But there are some things we simply can't predict or protect him from, such as . . .

A Possible Second Transplant

There is a very real possibility that Max will need another heart transplant when he's older. The heart he currently has should grow with him but every transplant kid is different. The average lifespan of a donor heart is around nineteen years which means that there are kids who need a second transplant when they're very young and there are people who received pediatric heart transplants and are now in their thirties and going strong. It's impossible to tell which end of the spectrum Max will fall on because, like with everything else about his health, it's a "wait and see" situation. However, we're hopeful that he won't have to undergo this again and all we can do is protect his health and his new heart as best we can.

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