March 19, 2017 by Leah
A lot has been happening, so this may end up being an incoherent ramble, typed on my phone while my kids play at the McDonald’s PlayPlace and I eat their (not kidney safe!) abandoned French fries.
I had a great meeting with a nutritionist who is familiar with kidney disease AND breastfeeding, and I felt like she was the first person on my “team” who validated what I’m trying to do by saying, “I think breastfeeding is important!” and explaining how to tailor my diet to try to do it all.
I’ve been doing the kidney diet for about six weeks (I think) now and I am feeling really frustrated about it right now. I want a big salty pile of French fries topped with beans and cheese, lentil soup with whole grain bread, and a giant nutty spinach salad. I realize I can moderate and prepare some of this stuff in a way that allows me to stay under my limits for potassium, sodium, and phosphorus, but cooking all the damn time is hard. I’m constantly hungry, because it is really hard to fill up on refined flour and salads when one is used to eating a varied diet full of nutrient-dense (read: chock full of potassium) foods. I’m also not losing weight the way I thought I would because refined flour still has calories and I’m trying to eat enough to keep up my milk supply. So that’s a catch-22, since losing weight would help my kidneys, but as anyone who has ever seriously tried knows, cutting calories is not a sustainable or even always effective method.
My milk supply has been doing random things like dropping in response to changes in stress, sleep, food and water intake, chronic illness, and who knows what else. I have been feeding the baby on demand and pumping 2-3 times a day for six weeks and I am not producing noticeably more milk than I was to start with, so I decided to give up pumping. It is completely miserable to be reduced to feeling like you only exist in order to produce anything, but when that thing is tied to your innocent baby’s well-being, the emotional fallout from any decision or failure is major. I talked to our pediatrician, who said, “She needs YOU. Do not compromise your own health just to give her breastmilk. She is growing beautifully and will continue to do so as long as she has you.”
I haven’t yet determined whether or not breastfeeding is compromising my health, but I found that phrase really useful with regard to decision making and plan to discuss it with my doctors soon. In preparation for that, and after two very successful breastfeeding relationships with my first two babies (20 months and 16 months), I bought some formula for supplementing yesterday. I tried the baby on a bottle with a breastmilk/formula mix last night. She was happy and I was surprised by how relieved I am to have some of the pressure off me.
(Baby M is six months and her pediatrician suggested trying her on food, but after three days of working on spoon feeding it became clear that her tongue-thrust reflex is still firmly in place and she wasn’t really eating anything. She was having fun, but we’re taking a break because ain’t nobody got time for that.)
I’m starting to get more symptomatic, which makes me think my kidney function is declining, which makes me wonder why I’m bothering with the diet. My kidneys ache, my body aches, I have a metallic taste in my mouth much of the time. My high blood pressure is finally really well controlled with breastfeeding-safe Labetalol (which I take three times per day). Worst for me is that I have been really tired, most notably after exercise. A morning workout basically flattens me for the rest of the day unless I get a nap, and I have had one nap since Aaron went back to work after M was born (thanks, Mom), so that’s not sustainable. I either need to figure out how to exercise later in the day so I can collapse into bed or just go without. The only exercise that really appeals to me is swimming, and having to deal with a pool schedule is another hoop to jump through. I took a PiYo class last week and almost passed out because of my wonky blood pressure and all the fast-paced inversions. It was so disappointing because my heart and lungs were really digging it.
I know rationing energy is something people with chronic illnesses just have to do, but I am so angry that this seems to be becoming my life. I am dreading the next symphony concert I’m playing because I know staying up until 10 and being out of the house more often for five days is going to make me feel completely miserable and turn my somewhat-reasonably-ordered house into a total madhouse with unstable children, since that is what usually happens. And yet I don’t want to give up exercise or playing entirely or I think my decline will be that much faster. So I’ll just attempt to be fulfilled while being miserable.
My next labs and visit with my local nephrologist are at the beginning of May. I have a second opinion appointment set up with the nephrology department at OHSU on April 10th. I am hoping they will tell me I will make a miraculous recovery, or at least give me some direction into whether I am compromising my health by continuing to breastfeed. From what I can tell, nothing will be able to fix my kidneys, but I am still hoping for some degree of healing and maybe by taking some of the load off my system, that will happen. Or maybe the fancy drugs that my nephrologist wants to put me on will keep me from having a heart attack in five years and traumatizing my children.
In summary: there are no easy decisions, I’m physically tired from being ill, and I’m emotionally exhausted from trying to do all the things all the time.