Passing the family stone – A mother’s perspective on her daughter inheriting medullary sponge kidney disease

Baby feet

Passing a kidney stone is more painful than childbirth, I’ve heard. I’ve both given birth and passed a stone without pain killers. But I’ll tell you worse pain than both: passing on your kidney disease that causes kidney stones onto your child.

This is not a plea for sympathy, no pity-party post. Kidney disease is an unwelcome guest in my gene pool, it lives with us, but it does not tell us what to do. My most recent round of twenty-four hour urine collections and CT scans showed spongie kidneys, hypercalciuria, and hyperuricosuria. I’ve struggled with urinary tract infections my entire life, but didn’t pass a stone until I was thrity-two, after my second child was born. I urinated pure blood, thought I had the flu, and but made a urologist appointment at the behest of my father, who had experience with stones.

That was my first clue. My first unexpected trip to the ER was next. I got dilaudid and a nephrolithiasis diagnosis. A stent which I removed myself, a visit to the mobile lithotripsy van, and I thought I’d seen my last kidney stone incident. No one told me that my bladder infections, a random kidney infection, constant irritation and irregular but noticeable pain from the flank down could be related to a kidney condition. I had no reason at that point to look deeper into my physiology.

Until I was forty-one, when the blood in my urine reappeared and an apathetic urologist told me a stone I’d developed wasn’t obstructing anything in my kidneys that “had a spongy appearance”, so my pain was either imagined or caused by something else he couldn’t find, and he’d schedule a cystoscopy if I insisted. I went home that day, drank eighty ounces of water, and passed a 7mm calcium oxalate/calcium phosphate stone. I don’t have resources to waste on doctors who think I’m imagining things.

Fortunately, I easily found a better, reputable urologist. My new urologist ordered a twenty-four hour urine collection, an ultrasound, and blood work.  He referred me to a nephrologist. They spent time with me, explained things to me, gave me CD’s of my tests and my films. I felt vindicated, like I was solving pieces of a bigger puzzle. A puzzle that was imperative to solve, because my daughter began throwing blood in her urine at age three. Her pediatric nephrologist had called it “idiopathic hypercalciuria.” Together with the doctors we decided against performing a biopsy or CT scan on our young child, as her symptoms were limited to hematuria and hypercalciuria. Hypercalciuria and medullary sponge kidney disease are linked, so we went with the safest bet: my daughter was a spongie like me.

Which was good, and bad. There are many worse kidney conditions to be diagnosed with than MSK, but the thought of my daughter screaming in pain, buckled over and writhing in a fetal position in renal colic makes me want to cry. The thought of dialysis and transplants not being ruled out for her takes years off my life and keeps me awake at night. I’d give anything for her kidneys to be normal. I would pass a stone everyday of my life if I could guarantee her future free from end stage kidney disease and failure.

We put her on diuretics like me, but they stopped being effective after a few months. We have her on a low sodium/low oxalate diet, which means she doesn’t get to eat like other kids. She has to drink forty ounces of water per day at minimum, which feels as routine for her as brushing her teeth. Her kidney function has dipped, her urinary calcium goes up and down, but her kidneys are growing normally. We walk out of her pediatric nephrologist appointments with a mixed bag of news, certain uncertainty, but hope.

I’m doing alright with MSK, maybe she will too. I still have stones and cysts in my kidneys but if they’re growing, they’re doing it slowly. I manage the aches and pains with the healthiest approach possible – I start with the ibuprofen and work my up to the bigger guns, if possible. All the while, I try not to lose my composure, because scaring my daughter is not the effect I want. I keep my worst fears about her kidney condition locked away in the part of my head I call “Unreasonableville“. I try not to go there. I don’t control what her kidneys in their congenital abnormality decide to do. I control my thoughts, I control our habits, and I control our nutrition. What I can do for our situation, I do well. There is no acceptable alternative. 

I’ve learned to cook low sodium. The entire family is used to it. See below for my low sodium recipe for Avgolemono (greek lemon and pasta soup). I try to avoid sounding overbearing when she goes to a friend’s house (no hot dogs or mac and cheese, please). I’ve got her in sports that reinforce bone strength, since the excess calcium she excretes comes from her bones. The relationship we’ve developed with her nephrologists is so in tune, they read looks on my face like they’ve known me twenty years.

I do all I can, because tomorrow may be better with the right efforts . I think good thoughts for the kids I see in the dialysis room. We raise respectable amounts of money for our annual kidney walk. We wake up every day and say “thank you,” because we have the strength in spirit and body to not slow down. If it was just me, I wouldn’t care. I’d take my lumps from a mean hand-me-down condition without complaint (maybe a little complaint). I see what’s out there – pediatric cancer, child abuse, suffering of all kinds, and I am aware of how fragile we all are, kidney disease or not.

The acute physical pain and mental hits caused by kidney disease will knock you down, make you beg for mercy, and scream out loud for relief. I’m okay with never experiencing these things again. But I prefer my daughter never experiencing them at all. I’ve gotten comfortable with being uncomfortable, and that’s as good as it’s going to get. Maybe a little bit better, on the good days.

The good days, when the chalkboard decal on the fridge where we track my daughter’s sodium reflects a lower count, and she shows personal ownership of her MSK. The good days, when I’ve made a low sodium dinner that five picky palates enjoy. The good days, when the urinary tract is silent and the spongie kidneys aren’t fighting with a rock that has no business inside a vital organ.

This kidney disease comes from somewhere. I have no idea how my ancestors survived passing the family stones without dilaudid to knock them out. Maybe they took a running start and ran their heads into boulders, thereby rendering themselves unconscious. Who knows (I’ve thought about doing that more than once). I know this — I’ve got the facts. I’ve got a journal of low-sodium recipes, and I’ve got a mission.

I’ve born another spongie, but I’ve also created a fighter. On the days we feel good, which is most of the time, I store up my gratitude and bank it for the future.

Samantha Gianulis is a freelance writer who lives with her husband and children in Southern California.

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photo by Samantha Gianulis

SAMANTHA’S AVGOLEMONO – GREEK LEMON AND PASTA SOUP

What makes this low sodium is creating my own chicken broth. The orzo has zero sodium and citrus helps the kidneys. It is my mother-in-laws recipe from Greece.

2 large, bone-in chicken breasts

6 cups of water

8 oz. orzo or long-grain rice

juice of 2 lemons

1 tsp. cornstarch

2 eggs

* optional – lower sodium chicken boullion base

 

In a heavy saucepan over medium-high heat, place chicken into water and bring to a boil.

Cook chicken completely in water, about 10-15 minutes, checking to see if meat has internally reached 165 degrees.

When chicken is cooked, remove from saucepan and let cool.

The water is now your broth base.

While broth is boiling, add orzo or rice.

 

While rice/orzo is cooking, strain the juice of 2 lemons into a separate, large bowl.

Add cornstarch, whisking into lemon juice.

Set aside.

 

In another separate, medium-size bowl, crack eggs and whisk.

Add whisked eggs to lemon juice/cornstarch mixture.

 

One cup of broth at a time, scoop chicken broth into the large bowl of egg/lemon juice/cornstarch mixture, whisking vigorously so as not to scramble the eggs. You’re bringing the eggs up to the soup temperature gradually (tempering).

Scoop the cups of broth in, whisking until you have incorporated about half of the broth into the egg/lemon juice/cornstarch mixture inside the bowl.

Add the broth you mixed with the egg/lemon juice/cornstarch mixture back into the saucepan with remaining broth and mix well, keep on low flame.

Pull apart cooled chicken from the bone, and add torn strips of the poached chicken into the soup.

What you will have is a low-sodium, silky, smooth, light but filling egg-lemon soup with chicken.

Add more lemon juice, if you prefer.

* If necessary to make the soup heartier, I add “Better Than Bouillion” lower sodium chicken broth base, one teaspoon at a time at the end while soup is still cooking.

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About Samantha Gianulis

Samantha Gianulis is a freelance writer who lives with her husband and children in Southern California.
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9 Responses to Passing the family stone – A mother’s perspective on her daughter inheriting medullary sponge kidney disease

  1. Deepak says:

    Hi,

    Thanks for sharing your experience.

    My sister’s baby girl (4 months of age) had no symptoms of kidney problems but when we have had a recent visit to a doctor with a concern of her weight (3 kg only at the age of 4 months) we got her blood/urine/Sonography reports that identified the desease of MSK (Medullary Sponge Kidneys) with kidney stones of 3 mm – 5 mm size (2-4 stones in both kidneys).

    Currently she is being diagonized for UTI (infections) and these kidney stones. Treatment with liquid, fluids, and calcium control procedures have been started from today. However we are full of anxiety and thoughts of a severe pain to her scares us.

    Any suggestions on diet, treatment and if she needs surgeries like Lithotripsy to break those 3-5mm stones?

    Thanks
    Deepak

  2. Veronica says:

    I was diagnosed with MSK 25 years ago but never really thought much about it. I had bouts with kidney stones probably every 5 years for which I have had lithotripsy 4 times now. I think at the time of my diagnosis I was too busy raising my family to think much about it. My most recent lithotripsy procedure was done in September 2015. I figured that the statistics were that I would be good for at least a few years. But no such luck. The day after Christmas I was in severe pain that had me call my daughter to take me to the emergency room. I was surprised to find out that I had a stone stuck in my right ureter (the very side I had just had the lithotripsy procedure on) which was blocking the urine and causing the kidney to be infected. I was admitted to the hospital, a stent was inserted, and I was put on antibiotics. The pain got better but I left the hospital with the stent and the stone still inside. I will be going back in the very near future to have the stent and stone removed; at this point I am just waiting for the authorization from the insurance company to go through. The important thing at the time I was admitted to the hospital was to release the urine and clear up the infection. When I got out I decided to go online to look up more on MSK and was very surprised to hear that so many people actually have it. Like one person that I read about, I thought it almost sounded like something the doctor made up. I now realize that it is more serious than I ever thought. My four children are now grown and so far no one has shown any signs of having this. My hope is that none of them will. My understanding of it is that it is congenital but not hereditary. Since I don’t know much about the health history of any of my relatives, I don’t know of anyone else that has had it to be able to prove that right or wrong. I know my mother, who passed away 10 years ago, had kidney stones at one time in her lifetime but I don’t think she had ever been diagnosed with MSK, at least not that I am aware of. If this is a congenital condition, it almost seems like there isn’t a whole lot that can be done about it except to deal with it as it rears its ugly head. I’ve done the drinking tons of water, I don’t take in a lot of sodium, or eat a lot of calcium products, so it almost seems like the stones just form because of the condition of the kidney. I even asked my doctor if there was anything I could do as far as dietary. He said that since all of my blood work was pretty much normal, the best thing he could advise me to do is to drink lots of water and suggested water with lemon. Has anyone else heard anything else that is not completely gross that has helped in any way? Would love to hear from anyone who has any good information. And hearing from someone who actually deals with this condition would maybe be better than reading about it or even talking to the doctor about it. The doctor is certainly there to help with needed procedures, care, and medication but unless he/she has the condition themselves, they don’t know what it is really like to actually deal with it. I try to keep positive and not show that I am in pain or talk about it but sometimes it is really difficult and can be exhausting. I come to work every day, stent and stone and all, and do my job. By the time I get home, I’m exhausted from just having to be cheerful throughout the day when really I didn’t feel well. Some days are harder than others and I am certainly grateful for the better days. Can anyone relate?

  3. Denise says:

    I currently have stents in both ureters,as bilateral stones were found and I had an investigative procedure on April 4th,and one stent was put in. Next op was 14May,and one side was lasered and a stent put in the other side too.Subsequent X rays show that though the stone broke up,part of it has made its way downwards – good – but it’s wedged d between the stent and the wall of the ureter. It feels as though it’s dropped further now but the urgency to pee is constant and almost reducing me to tears from tiredness and pain. I’m not short of pain relief,but anything opiate-based makes me agitated and wide awake so can’t take them at night. I don’t yet have a date to go back,as it’s a 4 to 6 week waiting list; 6 weeks will be up next Thursday,so I have everything crossed that they’ll finish the job and give me relief!

  4. Jammie Armentrout says:

    Thank you for posting that, i have a sponge kidney aslo and have wondered if anyone else had it as well cause when i tell people what i have they look at me like i have 3 heads (i was starting to wonder if my Dr made that name up…lol) i have 2 kids a boy almost 13 and a girl 10. i also get migrain headaches and my son gets them as well, so im hoping and preying that neither of them get my sponge kidney. No one on my moms side has had kidney stones that she knows of and my dad has passed a few but he does not think anyone on his side has the sponge kidney either, and to top it off my half sister (same mom) has had stones in the past also but has never been told that she has a sponge kidney. So im not really sure what side of the family mine comes from. I do know they did not start till i got pregnant with my first child when i was 18. i have had sever of those lazer surgerys to break the stones up, as a matter of fact i just had on on Friday March 14 2014 (2 days ago). i was doing good for a while my Urologist told me my kidneys looked good they were the best he had seen them in years…and i went 4 years with no stones. Then i had a 3mm in my left side that just would not pass for nothing, and there is a 6mm just sittin on the right side that has not dropped yet, so i will get to go through this all over again when it finally does…my stones are calcium stones so body over produces it…but the post was very inspiring and again thanks for posting your story….

  5. Charlene Crosthwaite says:

    First of all Thank You for posting the soup recipe! Sounds delicious!
    I have been dealing with kidney stones since this past May. Was diagnosed with a mass on my kidney and a 1.7 centimeter kidney stone. Had a stent inserted in June to relieve a kidney blockage. Then had a lithotripsy to breakup the stone. Had a second lithotripsy scheduled which the doctor cancelled after the first blasting. I thought the stone(s) were completely gone when he suggested pulling out the stent. So can you imagine how surprised I was to be told that “No, the stones aren’t gone. In fact there are several that are 8 to 10 millimeters in size still in the center of the kidney. But the chance of a stone(s) causing a blockage again is very slight.” So I insisted on another lithotripsy to get rid of those stone(s). Anyone who has dealt with kidney stones knows what I’m talking about. The pain is the worst ever. Yes, I’ve given birth, four times, twice with no pain drugs at all. Kidney stones have birth pains beat ten fold. I’ve also passed several stones the largest being about 6 millimeters. Now I have a third lithotripsy scheduled for later this month. The reason being that there is a 10 millimeter stone and several large fragments lodged in my ureter. So far they haven’t caused another complete blockage. I’m keeping my fingers crossed that I make it to the day of the procedure without complications. I usually avoid trips to the local hospital, but over the last few months I’ve actually been a patient in three different ones. Not counting the times in the ER and the x-rays, CT scan and ultra sounds, it’s like a second home now. I know I have calcium-oxalate stones and have been following a low sodium and low oxalate diet. I have spoken to several other people who deal with nutrition issues to find out and come up with foods I can eat and others I need to avoid. I’m not sure what’s coming in the future, but I know that all these problems can be passed along to our children and grandchildren. Haven’t yet done a 24 hour urine collection, but would love to know why my kidney continues to produce stones. How did one 1.7 centimeter stone become several 8-10 millimeter stones? Just started a new vitamin/mineral tablet to see if it will help. It’s suppose to change the chemistry of my urine so stones don’t form.

    • Lynn says:

      Hi I am interested in the vitamin that you started to help with stones and if it was your doctor that told you about it.

  6. Belynda Abbey says:

    Thank you for such a well written piece. I have MSK and several family members who make stones but don’t have MSK. We haven’t had our children checked because they do not have any symptoms at this time, and because we were concerned about labeling them with a painful, expensive disease that would be considered a pre-existing condition when they were ready to purchase insurance some day. It’s hard enough watching your child suffer from the flu or a bad allergic reaction. I can’t imagine watching them suffer with stones. Yes, I would pass a stone every day if it meant my children would never suffer the same. I hope and pray that a treatment is found that will prevent the stones and infections, and I pray that the doctors and nurses who treat us will have a better understanding of what we experience. I hope that you and your daughter have better days ahead. And thanks again for sharing.

  7. Mary Maston says:

    * That was supposed to be Urologist, not Nephrologist.

  8. Mary Maston says:

    As a mother and an MSK patient myself, as well as being an MSK Advocate, you hit the nail on the head for me. Thank you for sharing your experiences. My youngest daughter is 7, and is starting to show signs of MSK as well. She just finished a round of antibiotics for her 2nd UTI in less than a year, and we’ve already seen a pediatric Nephrologist once (I’m calling today to schedule the follow up visit from this infection). Although according to ultrasound, she doesn’t have MSK yet, I have an overwhelming fear of what’s to come for her. This is why it’s so important that we continue to spread the word about the TRUE symptoms of MSK, the pain and frustrations that go along with it, and the need for new research and treatment options. We as parents know what we’re up against, we’ve dealt with it for so long and have basically come to accept it. However, I refuse to accept that my daughter is going to have to suffer as I and the thousands of us around the world have. There ARE answers – we just have to find them. I wish you and your daughter the best of luck!

    Mary Maston
    MSK Advocate

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