Don't Slap Your Kidneys Around

“Lilly! It’s good to see you! How are you today?”

Lilly looked at me as though this was an unreasonable question to ask. “Fine,” she grumbled. 

Just as I was about to respond, she continued, “I’d be better if you just gave me the water pill. It worked really well before. Why won’t you just give it to me? This one you gave me didn’t do a thing. My legs are swollen. I’m tired, and I can’t breathe. It’s no good. I don’t know why you won’t just give me the water pill.”

Since waking this morning, I’d been preparing for this. Nearly an hour before my alarm went off, I opened my eyes and immediately began wondering whether any life-threatening labs had come in overnight - in particular, the ones about Lilly. On mornings like that, there was nothing for it but to jump out of bed and go to my computer to check. There was no going back to sleep.

Lilly’s kidney function had declined steeply. A year ago, when I met her, her kidney function had been close to normal. Now it was about 20% of normal. The change might be easily reversible or completely irreversible. It was probably somewhere in the middle and only time would tell. 

Lilly may be suffering the effects of having taken too many water pills, and her kidneys would slowly recover from that. Maybe the decline in kidney function was because her kidneys were not getting a good blood supply because her heart was so troubled. Maybe it was damage directly to the kidneys from too many years of high blood pressure. It was probably a mixture. My job with Lilly was to figure this out, and that was going to take time. Giving her water pills without understanding her kidneys was a bad idea. 

Just a year ago, Lilly thought she was fine except high blood pressure which didn’t cause her any problems. Now, I had to somehow break it to her that she has stage 4 (of 5) kidney failure and class 2 (of 4) heart failure. This was not a “keep an eye on it” situation; this was a “I have some bad news for you” situation. As Lilly had already made clear, she had some issues with hearing bad news.  I would have to be careful about how I framed and navigated our upcoming conversation, as I couldn't predict how Lilly would react.

The response to Lilly’s question that popped into my head was, “Because your kidneys are most of the way to failed and the treatment is different based on if they’re permanently broken or if you just temporarily broke them.” 

I took a breath and managed to keep that to myself. 

“Now, wait a minute, Lilly! I think I see a little difference! Look, your shoes are not cutting so far into your feet! Your feet really are a little less swollen, and I watched you walk down the hall. There’s a little more pep to your step! I agree you’re nowhere near where we want you, but we knew this was a little dose. It sounds like you haven’t had any side effects?”

“I guess you’re right. I’m a little less swole, but it’s not enough. The water pills worked better. Why won’t you just give me them?”

Feet from a reddit post, looking like Lilly’s.

“Both your heart and kidneys are struggling, Lilly. You can see the fluid building up in your ankles and feet. Your body is full of fluid. The reason for that is that your kidneys think your body is dry. The reason your kidneys think this is because your heart can’t move the fluid to them. Since too little blood is getting to the kidneys, they can’t tell that there’s too much water in the body. It’s like the heart and kidneys have different ideas. The water pills make the kidneys get rid of fluid even though they think they shouldn’t. It’s kind of like telling the kidneys that we don’t care what their opinion is, this is what they’re doing.”

“Oh! I can see why that would make them unhappy! I don’t like being forced to do stuff that I think is a bad idea!”

“Exactly, Lilly! When you took all the water pills, it was like you went in there with brass knuckles and told your kidneys this is what they were gonna do.”

She looked horrified. “I’m the last person in the world who’d force someone to do what they didn’t want to do!” Then she giggled, “Hey, kidneys! Listen up now and work better!” 

“Exactly! What I’m trying to do is to make things better for the kidneys. The pill you’re taking makes your heart work a little less hard so it can work smarter. If it pumps the blood better, more fluid gets to the kidneys. Then the kidneys are happier and they are getting more on the same page with the heart about how much extra fluid you have on board. That way, the kidneys get rid of more fluid and bring down the swelling. Does that make sense?”

“I guess so, but I wish they’d figure it out faster! I’m tired of being this swole!”

“But Lilly! We just started working on them yesterday! Give me a little bit of a chance - please!” 

She smiled grudgingly.

I brought her labs up on my computer screen so that she could see the bright red “critical” next to her BUN. Hopefully, this would help persuade her that I wasn’t exaggerating.

“You can see these numbers here. They’re all different ways of telling us how well your kidneys are working.  The BUN number tells us how dry your kidneys think you are. It’s quite high.

“The GFR tells us how well your kidneys are working overall. Your GFR is 23. A year ago, it was 60. Something bad has happened to your kidneys. I’m hoping that it is just that your kidneys didn’t like all the water pills you took and if we give them a chance to recover from that, they’ll come around. We’ll have to see. 

“I mentioned yesterday that kidneys can fail very badly without giving a person any symptoms. The symptoms of kidney failure are just nausea and fatigue. You can get those if your heart is not working well, too, so it’s hard….”

“I do feel kind of nauseous all the time, but I thought it was just cuz I was getting older and maybe eating too much. I’ve gained weight because of all this swelling, but I think if I got that off I’d be skinnier than I was a year ago.”

“Yikes, Lilly! I don’t like it when my 67-year-old patients lose weight without trying. We’ll have to keep an eye on that! 

“The other symptom of kidney failure is a metallic taste in your mouth like you’re sucking on a penny, but that usually doesn’t happen until the kidneys are worse off than yours.”

“Yuck! I don’t want that! I’m glad I don’t have that one!”

I returned to the computer screen. 

“These are your liver labs. They’re normal. This is your blood count. It’s normal except for you’re a little anemic; your red blood cells are down. This can happen if your kidneys are not working well. It’s another thing we’ll keep an eye on.” 

Lilly was nodding and following along.

“This number, BNP, is related to your heart. It goes up when your heart thinks there’s too much fluid on board. You can see that yours is quite high. 125 is the top of normal and yours is about six times that.”

“Oh. Now, why can’t my heart just tell my kidneys that there’s too much fluid on board and the kidneys do what the heart says?”

“That’s a great question! If we could make them do that, we’d win the Nobel Prize in medicine. 

“We’ve already seen what happens when we just make the kidneys do what they don’t want to do. You end up hurting your kidneys. 

“The kidneys just can’t work if they don’t get a good amount of blood, and that’s not happening. The real problem here, though, is not your kidney’s failure; it is that your heart is not pumping well. That is called ‘heart failure’ by the way. 

“There are two kinds of heart failure: one when the pump just doesn’t pump well because the walls aren’t moving as well (that’s like when someone has a heart attack), and one when the heart can’t fill properly because the walls are too muscular. We’re getting an ultrasound of your heart to sort this out because, depending on what it is, the treatment is different.”

I don’t go into these details with Lilly, but the official method for diagnosing heart failure is the Framingham criterion. Lilly officially meets them with two major (neck vein distension, third heart sound) and two minor (dyspnea on exertion and ankle edema) criteria. The lab value BNP is not an official part of the criterion, but it is helpful because it provides an objective measure of her heart's condition. I don’t want Lilly to feel I’m holding back information, but I don’t want to overwhelm her either. It’s hard to find the balance of giving the right amount of information.

It’s also hard to find the right balance of optimism. On the one hand, I don’t want her to be more despondent than she needs to be. On the other hand, I want her to recognize the seriousness and potential life-limiting nature of the situation. I don’t feel that I would be doing Lilly any favors by letting her continue living in denial that she has a life-limiting illness, but I would also not be doing her any favors to make her think she’s going to be on dialysis next week. I barely know her, and we are going to have to navigate the nuances of presenting this information so that she will have the appropriate level of worry. 

Lilly interrupts my thinking by telling me what she is thinking. 

“Whatever. Heart. Kidneys. They’re getting old. I knew something bad might happen when I decided to leave my blood pressure alone. 

“I didn’t think of it like my kidneys had ideas about what they wanted to do, and when I took all them water pills, I just slapped them around. I feel bad, but I didn’t know. I guess we can do it your way and see how they do. I don’t think the numbers are that bad. And I know they’re gonna get better.” 

She did not pause long enough for me to interject anything before changing the subject and looking down. 

“You’ll be so proud of me, though! I thought this morning that I was doing so much better on half a pill that maybe I should take a whole one, but I decided to wait until I saw you.”

Very interesting. At the beginning of our appointment, Lilly had to be convinced that there had been improvement. 

“You are right, Lilly! I am very proud of you, and I appreciate that you waited. It makes it so much easier for me to figure out what is going on if I’m the only one making changes! Thank you for waiting.” 

I wanted to explore with her a bit more about her thoughts and feelings about “slapping her kidneys around.” I wondered if she had been slapped around at some point, but I didn’t see any way to get to that topic since she had signalled we were moving on.

“Well, shall we get a set of labs today and see what kind of moves your kidneys are making? I bet you’re right that they’re better today.” 

“Yes. I’m kind of curious now that you’ve helped me see them better. Is there anything I can do to make them happier? All I know to do for them is exercise them plenty by drinking a beer every day!” 

She laughed heartily at her own joke, but I figured she was also asking for my opinion about a daily beer. I laughed, too, and replied, “I will not give you a hard time about a daily beer or even two, but I’d discourage more than that. Although, wait a minute! What kind of beer are you drinking?” 

Years of working with patients have taught me that if Lilly is willing to admit to one beer daily, chances are, she’s drinking at least two, and “one beer” can mean anything from one zero-alcohol beer to a 16-ounce can of fortified beer. Asking patients for specifics here will give me a clue about whether Lilly is telling me what she thinks I’ll want to hear, or whether she’s being honest with me - and with herself.

“I only drink Miller Lite. A six-pack lasts me a whole week. I always skip one night each week, just to prove I’m not addicted. I go shopping every Friday because then my refrigerator won’t smell like fish so every Thursday night, I’m out of beer.”

Well, Lilly has proven me wrong once again. It is not surprising that my experience with other patients does not fully translate to her. I am learning that I can rely on Lilly to say exactly what she thinks. 

“That’s fine with the beer, but you do need to pay attention to your fluids. Drink water when you’re thirsty, but no more than that. I might give you different advice about drinking water later when we know more about what’s going on with your heart and kidneys and when we have your medications optimized, but for now, that’s my advice about drinking water. Some people giving health advice say to make sure you drink a particular amount of water every day, but that is not good advice for you. Your kidneys may not be able to get rid of a lot of extra water. If you don’t drink it in, you don’t have to pee it out, but drink if you’re thirsty.

“Also, over-the-counter pain medications like ibuprofen, naprosyn, aleve, advil, etc. are hard on your kidneys. The only over-the-counter pain medication you may take safely is Tylenol.”

“I don’t take none of that stuff! It scares me because my cousin had an ulcer once from it.”

“Fair enough. Then you’re already doing what you can, it sounds like. A couple other things that won’t help your kidneys necessarily, but will help your leg swelling: keep your feet up as much as you can stand, get all the salt you can out of your diet, and compression socks. 

“I can’t sit still for long; I don’t use a salt shaker, and I hate socks.”

I consider mentioning how much sodium is in prepared foods, but it’s already been a long, complicated visit. Someone else will have to have that conversation on another day.

“Let’s increase your medicine to a full tablet, recheck your labs, and I’ll see you tomorrow afternoon. 

“By the way, if you’re having a hard time paying the copay at each visit, we have a sliding scale. Would you like to see our financial person?”

“You mean I wouldn’t have to pay the $30 at the desk each time? That would be great! I know I need to see you, and I figured I didn’t pay anything out all those years, so it kind of evens out, but $30 is a lot of money, especially coming in so often like I am.”

Once again, I am grateful to work at an FQHC where we have a sliding scale for copays. Our financial counselor can help her apply for discounts at the lab and hospital, too. I’ll make sure they connect. 

I tell Lilly I’ll see her tomorrow and remind her to get her labs and increase her dosage. 

It is interesting that Lilly responded so well to the idea of her kidneys not liking to be forced to do something they didn’t want to do. I had expected that she’d have a hard time imagining things from someone else’s point of view, but Lilly surprised me pleasantly on that front. 

I figured Lilly, like her kidneys, would reveal her secrets in her own time frame. 

*All patients mentioned are patient amalgams made up of portions of the stories of hundreds of patients with heart failure that I have seen over the years. Any resemblance to a real person is accidental. Lilly is definitely her own person and don’t you go thinking she’s someone else.

**Nothing in this article is meant to be personal medical advice for anyone besides Lilly. If you would like personal medical advice please see your doctor. You can see how carefully the advice is tailored to her particular situation, personality, and body and your doctor will do the same for you.