Nephroptosis, Yes, it IS a Thing

So, I’ve been hearing about people who are seeing doctors that either think they are imagining the pain they are in, that they are seeking attention, or that they really don’t need to be helped.  It makes me sad and it makes me angry.

We got lucky.  We accidentally got an appointment with a different urologist in the practice my daughter was going to when she was in extreme pain.  Her usual one was writing it off as kidney stones passing (the pain) and told her to just lay down and suffer through it.  Trouble was, she was suffering through it for days and days and days.  We had to take a puke bowl with us no matter where we went.  She had to lay  down on the back seat of the car because sitting up made her puke and almost pass out from the pain.  In frustration, I called the doctor to be seen.

She was seen and the doctor (her “regular” was out town) who saw her TALKED to her and LISTENED to the answers.  He said he thought he knew what was wrong and sent her for tests.  He was right, and she was diagnosed with Nephrotposis.  Most doctors have to google it, or sound it out and guess the meaning.  We got lucky.  She was seen and it was diagnosed and she got surgery and she is now pain-free (well, until she actually DOES pass a stone and that is short lived).

Nephroptosis is one of those things that you don’t hear about.  It is pretty rare.  But it IS a thing!!!

While I don’t encourage anyone (especially my  daughter) to go googling around for what might be causing the symptoms that she thinks she has, if you landed here you probably already have and have a pretty good idea what is going on in your body.

THESE websites are clinical websites (one is even from the US government) that show it’s real and that surgery usually helps if you are not asymptomatic (and if you were asymptomatic, you sure wouldn’t be at the doctor because you wouldn’t actually… you know… KNOW about it.).

http://emedicine.medscape.com/article/1458935-overview

http://www.jenkinsclinic.org/conditions/kidney-ptosis/

http://www.ncbi.nlm.nih.gov/pubmed/9258063
http://www.ncbi.nlm.nih.gov/pubmed/941371

The last two (from US National Library of Medicine National Institutes of Health) are a bit dated (from the 70s) but let’s face it this isn’t a fancy condition and when you’re not a sexy condition you don’t get a lot of funding or attention.

It is real and we need to let our voices be heard.  They thought I was molly-coddling my daughter until they found out that sometimes what is real is real.

Nephroptosis and Nephropexy… the continuing story

So… I’ve managed to get my head back above water… I’ve slept a couple times… and I am getting a little more clear headed.  Time to pull together more of the story.

It took way longer than I would have liked to get Amandya into surgery.  In my head I know that they can only schedule surgery when they have openings and when they have doctors scheduled to operate.  But it took two weeks to get her into surgery.  In my mother’s head, that is about 9 years too long… but it is a mommy thing.

I don’t recommend the hospital.  Won’t name names, but the cafeteria was nasty, it took an entire day of not being able to see her post-op for them to get her a room (they were BOOKED SOLID… guess there was a rush on people even though she was scheduled to have to stay over for..well… two weeks) and we weren’t allowed to see her until she was in her room. Once she was in her room, I couldn’t be happier with the way they treated her.

The Nephropexy went well.  Four little holes in her tummy and her kidney was sewn fast to her insides.

Doctor came in to see her, explained that she was lucky it only took 9 months to really determine what was going on, it often takes far longer…. longer while the people with Nephroptosis gain a reputation for being overly dramatic, drug seekers (pain meds), hypochondriacs, attention seekers… because obviously nothing can be wrong… blood tests and normal x-rays don’t show anything and the symptoms don’t really point to anything.  The last patient Dr Geisler treated took THREE YEARS to diagnose.  I can’t imagine having to deal with the kind of pain that Amandya was dealing with for THREE years.  That is obscene.

Now… I have another flag in the air to wave.  This one has fewer followers because this is such a rare condition.

the “cure” isn’t such a complicated matter.

what I need to do is try to find a way to raise awareness.

The nephropexy was a success.  The holes were glued shut.  The kidney felt heavy inside of her where they sewed it fast.  But she is starting to be a semi-normal teenager again and it is wonderful to see.

Nephroptosis… Finally

Okay… so this is PRIMARILY about epilepsy.  But this adventure has been just too much not to share.

 

Nephroptosis
It happens most often to young women (late teens through early thirties) who are slender, active, and who typically have kidney stones.  The typical patient has been tested for almost everything and usually doctors have written them off as hypochondriacs or in search of pain medicine.
In our case, an answer is what we were in search of not pain meds.  In fact, she takes very few of the pain meds that the doctor has given her, preferring to just take the edge off.
What were her symptoms?  Looking back over the last... probably... year... I can look at things that may not actually be symptoms but maybe they are... 

pain in one kidney
nausea
vomiting
thirst
weight loss
frequent urination, but often very little at a time
dehydration
protein in her urine
kidney stones in both kidneys (not overly common in 16 year olds)
She rides in the back seat of the car laying down.

We've been tested for diabetes, lupus, Positional protienuria... so many things.

I've been fighting with doctors to listen to me, to listen to her.  Even when the doctor listens, I'm not entirely sure they hear.

I called the nephrologist and told him how much pain she was in over one kidney.  They suggested it was a pulled muscle and maybe she should see a orthopedist.  Or maybe if it doesn't get better with NSAIDs maybe see her urologist (who sent me to THEM in the first place) to see what they said.
I called the PCP and told them that she is throwing up.  They suggested that they did the work up on her for autoimmune diseases.  If she is feeling nauseous maybe she should see a gastro-enterologist.  The super duper meds they seemed to have given her were the "bestest they could do" maybe it is just the heat... or a stomach virus.

I finally got angry and talked to the triage nurse at the urologist's office and they scheduled me with an amazing doctor since the kidney stones doctor was in surgery.  Pure dumb luck?  Best thing that happened.
The new doctor listened to her.  He poked and prodded and talked and listened and ordered an IVP... with special instructions... pictures with a DEEP inhale... more with a DEEP exhale.  What did it show?  Her kidney drops minimally three vertibrae.  When she stands it ends up in her pelvis.  The uritor looks like a night crawler trying to free itself from a fish hook.

Nephroptosis is rare.  Most doctors and nurses have to spend time digging for information when you tell them what you have been diagnosed with.
It was amazing to see the difference in my kid when they believed her about the pain and other symptoms.  She hurts (today she hurt about a 9.8) and she still throws up... but they believe her and that makes so much difference in her.  she is scared of the surgery, but okay with having it finally fixed.  

Anyone have a similar story?  Anyone want to chat and commiserate?Now... surgery... in just a little over a week.