Food Restrictions

The more I learn, the worse it gets.

I remember earlier this summer, my brother-in-law asked me what kind of food restrictions I had with transplant. "Oh, it's not too bad," I replied. "Grapefruit (reacts with medication), raw fish (no sushi), no buffets, only pasteurized cheese (all possible bacterial hazards) ...that's about it."

Boy oh boy was I wrong! My recent education on transplant no-no foods all started with an episode of low blood sugar. I was at my friend's house doing yoga. I'd forgotten to check my sugar beforehand so we paused halfway through. My sugar, it turned out, was 29. Oopsie! Down went the glucose pills right away and I asked my friend if she had any juice. Nope, but she did have agave syrup. I had some of that and between that and the glucose pills I was back to normal and continuing my yoga in no time.

Flower of the agave plant

When I got home, I was telling my husband Todd the story. As soon as I said the word "agave" his facial expression changed to one of slight anger. "How do you know that's safe to eat?" he demanded. Knowing that agave came from a cactus, he thought it might be similar to tropical fruits, a category of things we were supposed to get permission to eat before doing so.

So I asked my Duke Lung Tramsplantees facebook group if anyone had heard whether or not agave was safe to eat. Everyone commented that it probably was because it was a highly processed food. So that was good.

Meanwhile, I had started doing some research into all of this and came across a very comprehensive document of diet guidelines for immunosuppressed patients. It was incredibly informative, but it also made me sort of angry. There were more things than I thought that I was restricted from eating. A lot more! And things I had still been eating. Check out the restrictions for dairy:

• No non-pasteurized or raw milk and milk products made from non-pasteurized or raw milk
• No cheeses from delicatessens
• No cheese containing chili peppers or other uncooked vegetables
• No cheeses with molds (such as Blue, Stilton, Roquefort, Gorgonzola)
• No Mexican-style soft cheese such as queso fresco, queso blanco

I confess I have had a couple of foods that fall into this category. I have had a deli sandwich or two (only places I thought the quality was high), I had queso fresco (cheese dip!!) on several occasions and I will likely continue to have it. Unpasteurized feta is also a no-no but even though I've had a lot of feta I think I've managed to avoid unpasteurized stuff.

The next category on the list is meats. This stuff is all pretty straight forward: everything has to be fully cooked, blah, blah. (I admit to having slightly under-cooked steak a couple of times - and I live to tell about it!) Also no raw/under-cooked eggs - unfortunately Caesar salad dressing falls into this category and I love Caesar salad.

The fruits and nuts category has a couple of downers: no unroasted raw nuts (pecans!!!), no roasted nuts in the shell (peanuts!!!) and no fresh salsa found at grocery stores (I love the salsa that Whole Foods makes!!). I subsequently found out that pomegranate is another fruit that interacts with our medicines...pomegranate!! I have definitely had pomegranate since transplant, although in small amounts. I'm going to try to avoid it now. I also had peanuts at a baseball game but I probably would again.

The vegetable category is pretty straight forward: wash everything before you eat it, no raw sprouts, no salads from delis.

Most bread, grain and cereal products are alright.

And then we get to the beverages category...  No unboiled well water (that's what we have at our mountain house - pain in the ass!), no non-pasteurized fruit and vegetable drinks, and THEN the bomb hits: No wine or unpasteurized beer. Unpasteurized beer! I also love wine. Well, before I got completely up in arms I had to figure out what unpasteurized beer was. Turns out it's pretty much everything made at your local brewery. Most big-time bottlers pasturize all of their stuff but small set ups often don't want to spend the extra money.

In case you didn't know, I very much enjoy a beer from a local brewery, even though ideally we are supposed to avoid alcohol. In fact, so do most of my friends as well so we spend a good amount of time at such places, or at places that serve that kind of beer. In fact, Raleigh has become a hot spot for small breweries. We have 21 of them that have sprung up all over town. It's awesome! So yeah, this is one rule I might have to continue to break. I also love wine, red wine...especially with a slightly under-cooked steak lol.  By the way, all of this stuff I drink in moderation.

So what is the point of all of this? The point is, it kind of sucks to eat after transplant because you have to think about a lot of things before you just shove them into your mouth. And honestly I'm really bad at this part of being a transplant patient. Most of the time Todd serves as the referee. I'm lucky to have him.

The other thing with all of this is that even with all of this information, we still have the right to choose what we eat - even if that sometimes includes things from the "bad foods" list. There is risk in almost everything in life, and with transplant you are constantly weighing whether or not things are worth the risk...  Should I go to the Fair where there will be 80 billion people wandering around, some of them sick and dirty handed an unaware of spreading their germs? Is there anything at all I can eat at Subway?? Am I wiling to give up my favoite chewy dark chocolate granola bars which contain raw oats? Should I go on a trip to Montana if it makes me halfway across the country from my doctors? What if, what if, what if???

In my opinion there is no right answer to these questions. Maybe there is a "should" but that doesn't mean there is an absolute "have to." We all have things we love to do and eat. And while most of us follow the rules most of the time, I think a little bit of cheating is okay.

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