My biggest personal struggle as a patient with OTC is my diet. My goal is to eat 45 grams of protein a day. I almost never make 45 grams but I usually do hit 40 grams.
It helps that I have discovered some higher protein snacks that I like such as yogurt, walnuts & cashews, hummus & canned chickpeas (I rinse them and then drown them in Creamy Italian Dressing). I also discovered a few years ago that I like black beans so I use them when I cook and liking black beans also makes a veggie burrito bowl from Chipotle an option when eating out.
I do eat meat, unlike some OTC patients that I have met, but I eat very small portions. I prefer pork such as ham steak, bacon, or pork chops over beef. I will eat chicken but it has to either be fried or in a casserole or soup. I eat egg salad but as my mother likes to say I like a little egg with my mayonnaise. I love seafood so I will save my whole protein load for the day for a shrimp dinner or steamed clams. I also love chickpeas and have discovered I like Channa Masala which is a kind of curry made with chickpeas. I also like sushi and find it is a good source of protein.
I was diagnosed at age 12 with OTC, so I never had some of the super low protein goals that infants who were diagnosed at birth or shortly thereafter have. I was always protein avoidant though. I would eat maybe two bites out of each quarter of a grilled cheese sandwich and that was only if I could also have pop, chips and a pickle to go with it. My mother says that before I was diagnosed every meal was a negotiation to try and get me to eat.
My biggest difficulties with my diet are not when I am home and can cook for myself but when I travel, especially when I fly. I usually do not have difficulties finding something to eat when I travel through a major airport such as Atlanta or Chicago. My difficulties are when I get delayed flying out of my home airport in Rochester, NY. We have limited food choices at the airport as it is and everything closes by about 8 PM. So if I am delayed beyond that I am stuck with what is available in the snack section of the gift shop. Luckily a lot of gift shops are now stocking snack size hummus & pretzels.
I do better when I travel if we either tent camp or share a condo with family so I can buy groceries and I can do a lot of the cooking myself. That way I can eat what I want when I want. When staying in a hotel, I need at least a hotel room with a microwave and a fridge so I can stash snacks and heat up leftovers.
Grubhub has also made traveling easier in cities. I can order whatever I want and get it delivered to the hotel. I did this when I went to Salt Lake City for the last UCD meetup.
I also struggled with my diet when I went away to college and lived in the dorm. Mind you I am in my 40s so the only options for delivery when I went to college were pizza, wings or subs. I will eat pizza but only if I dip every bite in ranch dressing and I will not eat the crust. I have a feeling I would have done better with the delivery options that are available now. Dining hall choices are awful for a UCD patient and I lived in a dorm so I had a microwave but no access to a stove or oven.
As a married adult, I feel I do better because I am more likely to cook when I have someone else to cook for. If it is only me, I tend to not eat like I should because I do not want to go through all the hassle of cooking for myself. Having an Instant Pot has also helped me eat better because I hate cooking but Instant Pot recipes are just dump & go. I cook everything from Chili Mac, meatloaf, pork chops & meatloaf in my Instant Pot. There is only the two of us in my household so cooking in the Instant Pot also gives me leftovers to take to work for my lunch.
My struggle as an adult is the high calorie foods that I have always enjoyed and been able to eat are now causing me to gain some weight. On the up side, I have not been hospitalized since I started Ravicti a little over 3 years ago. I have decided that meeting my protein goals, having good amino acid levels and staying out of the hospital are more important to me than being skinny.
My dietitian is currently happy with my ammonia and my amino acids but my new goal is to eat more fruits and vegetables and to try to kick my Pepsi addiction. My Pepsi addiction is strong so I am not sure I will ever totally kick that.
The UCD diet has it challenges no matter the age of the patient or the protein goal. It can be just as challenging in its own way to have a high protein goal as it is to have a low protein goal. It is a balancing act to meet your goal, stay hydrated & maintain your amino acids so that you stay healthy.
Amy Englert is an OTC patient whose main goal is to help other UCD patients navigate life’s ups and downs.
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