March 19, 2017 by Leah
After many phone calls, I am waiting for the final phone call from OHSU that will allow me to schedule my second opinion appointment. My PCP sent all my information over there and I registered with admitting and my file is now being reviewed by the head of the nephrology department who will make a recommendation about who he thinks I should see. Then they will call me and, I hope, get me scheduled sometime in April.
I hope he thinks I should see the same person I think I should see, but either way, I’m nervous. Does he think this is my fault? (I kind of do, even though it is probably just bad luck.) Does he think I’m ridiculous? Am I sick enough? Or maybe this is a textbook case and he has no idea why I’d want a second opinion. (From what I’ve been told, this is far from a textbook case, so I’m probably okay there. I have lost track of how many specialists have told me I’m medically “interesting,” but I know so far I’ve heard that from a neurosurgeon, a rheumatologist, several OBs, a couple of nephrologists, and some others.)
I also have an appointment set up with a local dietitian who works with kidney patients, who warned me that insurance usually only covers consults once people are bad enough to be on dialysis, but that mine seemed to be okay thus far into her investigation. To my mind, that doesn’t bode all that well for a kidney-friendly diet prolonging good kidney health, because if it did, wouldn’t insurance companies cover consultations with dietitians earlier in one’s decline? Oh, wait, insurance companies are ridiculous and don’t do stuff that might save them money (or at least put off the big expenditure of a transplant, and every MBA knows that it’s better to put off spending money for as long as possible).
I have, to no one’s surprise, been struggling with this kidney diet. Having a complete lack of direction as pertains to my case has been one of the issues, but just five minutes with the dietitian today helped that. E.g., since I’m breastfeeding, I don’t need to worry about the “low-protein” component of the kidney diet, as breastfeeding requires more protein and so those two factors basically cancel each other out. Unfortunately, I think this means I have to eat more meat than I’m comfortable with since I DO need to be cognizant of avoiding potassium and phosphorus, and beans, legumes, nuts, and whole grains are laden with phosphorus.
I also don’t know if it will help me at all or if I’m just trending toward kidney failure no matter what. So that makes it hard to say no to many of my favorite foods. And what kind of compliance is expected? Like, chocolate has never been a health food, so I feel about the same amount of guilt for eating chocolate now (potassium) than I always have (fattening!).
To further complicate things, I have spent the last decade trying to reconfigure my relationship with food into one that is based on the intuitive eating of real food instead of one where all food is bad and being fat and unhealthy is the punishment for not having the wherewithal to exist without caloric intake. I monitor my words and behaviors around food and body talk so as to avoid setting a bad example for the kids. There are no bad foods in our house, they are never forced to eat anything, and they don’t think being heavy or fat are bad things. I’m proud of the variety of food they eat and explore and how well they are growing.
Now the feelings of guilt I associate with getting preeclampsia in the first place (because it’s more common if you’re overweight or elderly, in the context of baby-having, and I am both), which led to this stupid kidney disease, are augmented by the fact that I have to tell my kids “I can’t eat that” when we are sharing meals together. I know it’s different because I have a legitimate reason to be eating a restrictive diet and it probably won’t trigger eating disorders , but since I’m the primary shopper and cook, my restrictions are already limiting their diets, as well. I show my love by making food for people, so this is really hard for me.
Finally, I’m just not used to having CKD yet. I don’t know if I’m in denial or what, but several times a day, I’ll be going along doing my normal thing and then I suddenly remember I have kidney disease. Then I immediately get pissed off by the unfairness of this situation, and then I think about having to get a kidney transplant and I get scared.