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I Have a Magical Floating Kidney (Nephroptosis)

I think you will agree that Magical Floating Kidney sounds much more interesting than Nephroptosis or wandering kidney. Agreed? Ok let’s begin. If you have been a reader of my blog for some time or you know me Away from Keyboard IRL then you will probably have heard me suffering in silence complaining about kidney pains or kidney stones/grit at some point in the last 10 years.

Only now have I received my diagnosis, after countless appointments with specialists, numerous trips to Emergencies to be put on drips for the pain and UTI’s. I was even suspected of food poisoning because I couldn’t leave the bathroom for some time. Turns out that is one of the symptoms of Nephroptosis – well mine anyway.

Having diarrhea every morning when my kidney drops on top of my stomach is not fun, especially since I am was the type of person to just get up and leave the house for a walk with my other half after breakfast. Because it was stopping me from doing anything I started taking anti-diarrhea tablets every day, which did allow me some normality.

This awesome cute Hello Kidney t-shirt is available from wrongtees.com
This awesome cute Hello Kidney t-shirt is available from wrongtees.com

Here I am jabbering on and you may well be asking:

What on earth is a floating kidney?

When the kidney becomes detached from the ‘normal’ location it descends when the patient stands up/sits down basically, when I’m laying down flat in bed, my kidney returns to the ‘normal’ place and resumes it job of filtering my blood and all that fun stuff. But, on rising from bed it drops, which means the bottom arteries and tubes can kink and cause UTI’s, horrific pain, weird full feeling on my kidney, constant weeing, kidney stones and so on.

Meanwhile the top artery is stretched and the kidney can rest in places it shouldn’t, in my case leaning near my bowel and making me visit the bathroom so much and sometimes when I’m not near the bathroom.

Another fun symptom I have is a feeling like I’m on a boat, I don’t get this a lot but when I do I have to sit down. I think that could be my blood pressure, which at the end of the day, my kidney is failing when I’m not laying down. Oh by the way floating kidney can be caused by a blow to the kidneys or just lack of supportive tissues from what I’ve been told. People don’t usually have symptoms from it.

I wanted to start this series on my blog to help others going through the same or looking for diagnosis. I’ve found a really good kidney Dr and she sent me for the tests that other Drs didn’t and I was pushed into the IBS category and Lactose intolerant group also given anti-depressants as it was suspected I was stressed.

I’ve eaten dairy all my life, but a very good digestive Dr I went to see told me to relax on the cheese as if I have an upset tum anyway, the cheese and milk won’t help. I went on the BRAT diet – Bananas, Rice, Apple, Toast, this did help a little but I lost a LOT of weight very quickly (which I’ve since gained again because of the anti-diarrhea tablets).

Radioactive

My kidney Dr sent me for a Isotopic Renogram – which is where they inject you with some radioactive liquid into your arm and then one test you will be laying flat as the x-ray scanner follows the liquid through your kidney. This will allow the Dr to see the time it takes for your kidneys to do their job. This test alone will probably NOT show any descent in your kidney. The other test is similar, an injection of radioactive liquid, then sitting on a stool as the machine x-rays. This was the test that showed the drop for me and the Dr will compare it to the laying down test to see the difference.

Nephroptosis

Treatment

After my test results came back, my kidney Dr gave me the diagnosis and what to do next. I don’t like taking pain medication, but I do have some for those really bad days, but to be honest I’ve been living with this for quite a few years now, so although I am grouchy a lot, I can tolerate it unless it’s a really bad one and then I’ll go to hospital. I had to buy a back support, which to be honest I don’t wear a lot as it makes me sweat horribly round my waist. It’s supposed to help lift the kidney a little.

Surgery

A nephropexy is the surgery that corrects a floating kidney. This is laparoscopic surgery which I’m told will only be about 3 incisions, one of them via my belly button although I’m not too worried about scars, the kidney will be lifted back into it’s ‘normal’ place. On Tuesday I’m going to chat about the surgery again with my Dr and schedule my pre-operation exam and surgery. I know I will have to stay in hospital for 5 days, but from what I’ve read on the internet it depends on your Dr and healthcare.

If you have found this blog post experiencing a wandering kidney yourself, then I do hope you are well and that you are feeling better soon. I’ve had several people say to me, why is it such a big deal you have 2 kidneys or they don’t understand the pain or lethargy this condition causes. I’ve also had some very supportive people including my family and my other half (who has brought me breakfast in bed more times than I could ever imagine <3 ) : when a day out has had 6 more toilet stops than they bargained for, or I didn’t attend a family wedding because of unexpected stomach upset. I’ll keep you updated on my journey with this, as I couldn’t find much information online about how people were feeling after surgery or when they started to get back into normal routine. I for one can’t wait to do some Zumba but unfortunately that’s a no-no for me right now and probably for a few months until after I’ve healed, so walking it is whenever I feel up to it.

UPDATE! I just found out my insurance refuse to cover my operation!! 🙁

I’d love to hear from you if you are going through the same thing!