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Pots Check Your Kidneys! Please Read!


Guest maia

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Guest maia

I found a lump in my R abdomen across from my belly button a couple years ago, shortly after being diagnosed with pots. All the doctors i told about it blew me off and said it was intesting and i could feel it only because i was skinny and it was my intestines and i was crazy etc. This happened so often i stopped telling doctors about it because i was afraid of being called crazy any more with no one even trying to find out what it was.

2 years later...

Resting my arm on it started bothering me again and i was worried so i did what everyone says youre not supposed to do. After many internet searches i thought maybe it was my gallbladder and it had moved so i tried pushing it back up where i thought your gallbladder should be. much to my surpirse, it moved. It moved right back under my ribs and i could hold it there. Also much to my surprise, when i stood up and held it there, i could breathe from my diaphram, i wasnt tachy, and i didnt feel like i was going it usually does every time i stand up.

I went to the ER and asked for an ultrasound. I was told i was crazy. Actually i was told there was 'nothing physiologically there'. Those exact words. Even after lifting up this lump and letting it go and having the doctors jaw drop when i let it go and you could see it through my skin drop back down to my hip. I started literally yelling at the ER doctor that I had not been able to stand up and breathe for years until i held this mass up, etc. If i wasnt so angry for being told its all in my head again i would have been embarassed for all the swearing i did. 'That is ***** physiological!" and I demanded an ultrasound and said i was not leaving until i had one. I was given orders for a next day ultrasound for a moveable right sided abdominal mass with breathing better upon its movement.

I had the ultrasound today

The ultrasound tech asked where this mass was as soon as i walked in. I stood up and put my fingers under it and around my side and and squeezed and lifted it up in my abdomen from just below my hip bone to above my belly button and almost under my ribs. She was slack jawed. She put the ultrasound wand on it and said, 'That is your kidney'. She had me let it go and checked with the wand again where it fell down. She found the kidney lower in my abdomen again with the wand. She immediately put the wand down, said she would be right back, left the room and came back with three more people. Two radiologists and a physicians assistant. They all asked where this mass was. I lifted it up again and let it drop. All their jaws dropped. The tech put the wand on it again while i was standing up and holding it up and they all said, yes, that is your kidney. They checked it again laying down then they all left the room.

The ultrasound tech came back in by herself and said i was all set. I asked to talk to the people who were in the room. The two came back and told me again that this was my kidney and sometimes it moves and it is different in everyone. I said again that i can breathe and am not dizzy etc when i hold this up and I dont have POTS symptoms when i hold it up so what do i do now. They also saw this happening as i held it and let it go and even put a pillow under my head to prop me up while i was panting from letting it go while standing. One of them asked me how i found it. They told me to follow up with my primary doc. I asked what other tests can be done to see why holding this up stops my POTS symptoms or where do i go from here to fix this. They told me there were no other tests except interventional radiology but they dont do that because... bla bla. it basically deteriorated from there and i was given lip service until i left saying everything was normal.

I immediately called my doctor-who is on vacation- and said that i had demanded an ultrasound at the ER and was told that this lump that i can move in my side was my kidney. I was sent to a covering doctor and explained everything to him. Without even a second though he felt my kidney which was down by my hip and he told me I had a floating/dropped kidney and this was causing the POTS symptoms and adrenal surges and this happens because there is an artery which gets kinked when the kidney moves and causes norepinepherine surges-he said this before i told him i had norepinepherine surges while standing. He asked if I could put a tight belt on to hold it up, When i showed him how tightly i had to hold my fingers around my waist to hold it up he said that there was more to how it caused POTS but i needed to see this specific specialist to have a standing and supine IVP and have my kidney put back where it is supposed to be because I am obviously debilitated by this and i need to see him ASAP.

I was so grateful and happy that I was in tears on the way out. Very grateful tears! On the way out his staff also gave me a copy of the ultrasound report from earlier today along with the doctors information i was being referred to.

The report says there is no mass in my abdomen. It says I was there for pain in my abdomen and hypertension (there was no pain until people started mushing it around and I am chronically hypOtensive) and that my liver and kidney were visualized and normal and that there is 'no change in the location of the kidney upon changing position.' They also kept the original handwritten orders that said i was there for a moveable mass with improved breathing on movement. They said they couldnt find the faxed copy from the ER.

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It is so frustrating. So many doctors refuse to think out of the box.

But it sounds like you are going to get this taken care of. I am so happy for you!

I have a similar issue. I am pretty sure my problems are steming from something that is 3 to 4 fingers below the sternum and also a little below the right rib. I give them exact location and yet they say there is nothing wrong here. This has been going on for over a year and a half. It has gotten more and more pronounced and I know this is the cause of most if not all of my problems. Just hope they find before I am on the autopsy table as one doctor joked recently.

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Guest maia

I hope so Joann! It now seems that there is a swarm of CYA happening though. I seriously think I will have to leave the state to get any care sometimes. But now that all this information has been volunteered to me, woe to those who try and call me crazy again!

Joann, that is exatly where i first felt this. The doctor i was referred to is a Urologist. Can you get an apointment with one?

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This is a crazy story! Unbelievable. Is this like Nutcracker Syndrome? Is your renal vein being compressed? I went through a whole thing with a vascular surgeon looking for this and indeed when I sit and stand this vein gets compressed. He didn't know what it meant though. (of course!!!!! :blink: ) I want to follow up with another Dr. about it, but need to find one who might actually know something. My God, did you find the cause of your POTS??

Joann - I've been pointing to that exact same spot to Doctors for several years, except mine is on the left. Ultrasounds show nothing.

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Guest maia

I was jus told it IS the cause of my POTS and the Neurepinepherine surges, and that there was a lot more to it but he didnt want to confuse me and it didnt really matter because all i needed to do was go see this Urologist and have standing and supine IVP's and get my kidney hung back up where its supposed to be.

I dont know too much about the nutcracker syndrome, but from what he said, it is the renal artery that gets kinked and compressed and released and it sets off a whole hormonal thing... im guessing the renin and angiotensin system plays into it somehow too because he said it causes adrenal issues and when i told him i felt better on the fludro while i could take it, he said that is why... and when the kidney is put back where its supposed to be all that stops.

Added: It was a really short and sweet visit. Let me feel this lump. Yup, that is your kidney. That is what is causing your problems, these are the problems, this is why, this is how to fix it, call this guy now, he is the best.

added: i forgot this. the doc who referred me to the urologist asked if i had flushing episodes too. For someone who hadnt seen this in a very long time as he mentioned, he sure is on top of it!

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Guest maia

Joann - I've been pointing to that exact same spot to Doctors for several years, except mine is on the left. Ultrasounds show nothing.

Make them do the ultrasound standing. After beign told by the radiologist that there are no standing tests, the doc who referred me to the urologist called bs and said IVP's can and are done laying down and standing and it is not even uncommon. It is nothing more than an xray with an IV contrast dye. He was quite perterbed and made a comment about new doctors not knowing much or wanting to or something like that. He was an older gentleman Dr. and had seen POTS before but said not in a long time.

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Guest maia

maia, thanks for sharing your story... let us know what comes of everything. I too had this all start with a painful area on the bottom right past my last right rib. I also have elevated kidney hormones. I'm very interested in your progress.

Can you go see a Urologist or Nephrologist for the elevated kidney hormones? From my understanding the kidney hormones talk to the heart hormones... for lack of a better way to put it. its part of the renin, angiotensin, aldosterone cycle. Ill definitely keep posting about it though.

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I was jus told it IS the cause of my POTS and the Neurepinepherine surges, and that there was a lot more to it but he didnt want to confuse me and it didnt really matter because all i needed to do was go see this Urologist and have standing and supine IVP's and get my kidney hung back up where its supposed to be.

Oh wow! I pray this is it for you and it can be fixed! And it took YOUR persistence to get this answer. I'm stunned. Please let us know what happens. I am definitely going to follow up on this for myself as well.

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Guest maia

In women Graves disease and floating kidney are very common causes of tachycardia. ...

www.ncbi.nlm.nih.gov/pmc/articles/.../pdf/calstatejmed00113-0008.pdf‎
by H Meyer - 1914

Autonomic Disorders with OHT. OHT may occur in a subset of patients with postural orthostatic tachycardia syndrome with mast cell activation. This syndrome is characterized by orthostatic intolerance presenting with fatigue, tachycardia, syncope, and shortness of breath on standing and OHT [

Similarly, other autonomic disorders like sympathetic denervation hypersensitivity may present with OHT [

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3101511/

http://www.healthhype.com/floating-kidney-nephroptosis.html

http://www.healthhype.com/floating-kidney-nephroptosis.html

http://www.readcube.com/articles/10.1038/nrneph.2009.169?locale=en

http://www.google.com/search?q=dropped+kidney_tachycardia&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a#q=floating+kidney+tachycardia&client=firefox-a&rls=org.mozilla:en-US:official&ei=cz7SUdToI5Wv4AOdm4HYCw&start=0&sa=N&bav=on.2,or.r_qf.&fp=251b5754895debb2&biw=1280&bih=673

http://news.google.com/newspapers?nid=1298&dat=19461105&id=DNxLAAAAIBAJ&sjid=P4oDAAAAIBAJ&pg=1889,5212953

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I have thd exact same story my right kidney drops in my lower abdomen when I stand up, I was told it would not cause these symptomsbut will bring it jp again I have a ffloating kidney it came on a couple years ago. its a major surgery to put it back though. keep me posted kn the outcome please.

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Guest maia

Yes badhbt, i saw that episode. I think it was about a year later that i was doing very strenuous work and was slammed with POTS. One minute fine, the next minute completely unable to stand. Without mentioning the show, i asked the dr if something had moved in my body because this only happens standing and i am perefectly normal lying down and I had been doing lots of heavy lifting. I specifically asked if they could check me standing and lying down to see if anything moved. I was told no and that organs dont move. If this is what happened, then it may explain why it is so difficult for me to figure out when i developed POTS. Since being diagnosed and learning about it so many things make me think I have had POTS all my life, yet there was one specific day where i could stand one minute and the next I was flat out unable to get up and diagnosed with POTS. Actually thats what i usually say when people ask me how long ive had this... All my life i think with episodes that exacerbated it maybe and then one day slam.

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Guest maia

Kim, Alex, thank you. Ill keep everyone posted. Kim, can you locate it and move it yourself? Im skinny so i guess im lucky in that i can so i was able to see it and demonstrate it and most importantly hold it up myself and have the symptoms go away while i held it up.

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yes I can see it and move it and th the doctors can feel it too. I am skinny but I am ondering it it could be putting presure on a nerve or blood bessel same symptoms as you. diagnosed with ultrasound standing. I do have elevated proteins in my urine but they never say anything about it.

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Guest maia

From what i read-and please confirm this yourself-protenuria is a symptom of dropped kidney. The way it was explained to me yesterday is that the artery gets stretched and relaxed and can kink and these are what cause the norepinepherine releases, adrenal fluctuations and subsequent tachycardia and why i felt good on fludro too. do you feel better when you hold it up? I can hold mine right up under the ribs and can breathe better when i do.

Follow up:

Raidologist reported to cheif of radilolgy

Radiologist attempted to be reported to Medical cheif of hospital-not in-referred to head of patient advocacy-told to speak directly with head

Spoke with head of pt advocacy-she is filing report-breifly explained situation-had to ask to tell her-she said, 'you can actually move this mass?' Yes. And the report says nothing there, etc. She is filing report and investigating.

Called Dr I was referred to. Appt made wih Surgeon, explained what i was told and what happened, instead of boooking out 2 months, i have apt next week.

Called dysautonomia doc. 'Very interesting, can you come in at 11?" Appt with Dysautonomia specialist in 1/2 hour.

WOW!!!!!

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Guest maia

It can also cause you to pee less. I on the other hand am peeing like crazy though i used to not pee so much. weird.

This is all happening too fast and is wiping me out! My head is spinning!!!!! wow.

Will post follow up.

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Can't wait to hear what they say. It would be great if you get answers really soon. And really unbelieveable, it seems like so many times it is a hurry up and wait game.

Oh and you asked if I have had my kidneys checked,I did have one doctor say I should have the renal checked, but so far no doctor has. I will look into a urologist. I did see a kidney doctor about a year ago and he said
"we could do a lot of expensive tests, but I don't think we need to right now. Continue seeing your endocrinologist, even though I don't think you have a pheo either."

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Guest maia

Can't wait to hear what they say. It would be great if you get answers really soon. And really unbelieveable, it seems like so many times it is a hurry up and wait game.

Oh and you asked if I have had my kidneys checked,I did have one doctor say I should have the renal checked, but so far no doctor has. I will look into a urologist. I did see a kidney doctor about a year ago and he said

"we could do a lot of expensive tests, but I don't think we need to right now. Continue seeing your endocrinologist, even though I don't think you have a pheo either."

Jerk. sorry, im of the opinion that most are these days... dont take no for an answer if you dont want to. I was litereally swearing and yelling at doctors for about 10 miutes in front of 20+ patients and all the docs in the ER. ha!

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Guest maia

Just saw dysautonomia doc. His words, after lots of questions, lots of note taking and exams and running in and out of the room calling other people, 'We are going to do this the right way now.' Had some bloodwork done, I and am on call for tomorrow to have a tilt table, and cat scans with dysautonomia doc present to make sure position changes are done and recorded and possibly another ultrasound and possibly more imaging and other tests too.

WOW!

I was also told to stop holding it up and be careful so i didnt twist or tear it.

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Guest maia

Will do. I was told by the doc yesterday that the stretching of the artery when it moves sets off the adrenaline surges ie. norepinepherine, it doesnt even have to kink. Kinking is bad and can kill the kidney-which i think would cause pain... Today i was told by the dysautonomia doc, 'of course you are having trouble breathing, something is pulling down.'

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