Discussions By Condition: Kidney conditions

my story..in case it can help someone

Posted In: Kidney conditions 5 Replies
  • Posted By: Anonymous
  • November 8, 2010
  • 02:44 AM

I wanted to write this because I have stuggled with kidney pains for years and I thought by maybe sharing my story, it might help someone out there who may be going through the same thing.

I have had kidney pains since as long as I can remember. I started noticing a common pattern with the pain, it was always the left side, and the pain would occur when I would drink a large amount of liquid/fluid in a short period of time. I was born with other medical issues, including Spina Bifida-Myelomeningocele, so aches and pains were normal for me. I mentioned my strange pain to my urologist one day and she sent me for a kidney function test. The test showed hydronephrosis (swelling) in my left kidney, but to my amazement, no blockages. My doctor basically shrugged off any idea of a blockage because of these test results, which I didn't blame her, but I KNEW there was something seriously wrong with me. She said the hydronephrosis was probably just a bad picture because all of my previous ultrasounds Ive had every two years, have never showed any swelling. She began thinking that my left, lower back pain was being caused from severe constipation, and wanted me to go in for a KUB x-ray. Me being stubborn, I did not have this done. It made me angry to think my doctor really thought this was the problem. My symptoms slowly started to worsen. During my pain "attacks" I then began vomiting profusely to the point where I would lose 5 pounds in just a day or two. My nausea was so severe, I couldn't move without vomiting, and the pain in my left flank area was just unbearable. The "attacks" which started only lasting 24-48 hours began lasting up to 5 days. I started to think that I was just going to die like this. No one would figure out what this was, and the pain would never end. I cried multiple times a week because I felt no one could help me. I felt as though no one believed me and that I was exaggerating this pain. It got so bad one day, I went and saw my primary care doctor. She sent me for a STAT abdominal CT scan with contrast. She called me with the results which read:

Severe dilatation (enlargement) of the left renal pelvis without ureteral dilatation that has since developed since the study of May 2007 with associated decreased and delayed perfusion and excretion of contrast material by the left kidney as compared to the normal-sized right kidney. The finding would point to a UPJ type obstruction.

THIS WAS IT. I googled UPJ obstruction, and there were my exact symptoms. I followed up with my urologist shortly after my CT scan. Two weeks later, I now have a nephrostomy tube which is helping drain my left kidney until I can have a stent put in. The nephrostomy tube placement x-rays showed the UPJ obstruction as suspected. As uncomfortable as this tube may be, I am SO grateful to have it.

So, moral of my story, if you think there is something wrong, DO NOT GIVE UP! Even if one, two, or ten doctors don't believe you, or tests do not show anything, do not give up. You know your body more than anyone. Just because one test comes out OK, that does not mean it is correct. Continue searching until you have your answer! I hope I can atleast one person with this post... thanks for reading. :)

Reply Flag this Discussion

5 Replies:

  • Thank you very much for sharing a somewhat similar story to mine. However, I took my research a step further because I very much wanted to know what caused my "renal" troubles in the first place. Finding that my calcium levels were in the "10" range (acceptable according to all docs, including the NIH guidelines, but WRONG), my PTH (parathyroid hormone) levels were elevated and my Vit D level was low, I began further investigation. By searching under the topic "high calcium" on the internet, this led me to the diagnosis of Hyperparathyroidism. A condition that is overlooked in hundreds of people, daily! (and this, in turn, is why I had/have the renal troubles!) I am now writing a book on this condition and how it affects us in so many ways. So many women (& a few men) are misdiagnosed with "Fibro", body aches, chronic fatigue syndrome, irritable bowel, depression, tiredness, high blood pressure, kidney stones....the list goes on and on. It is almost always in association the "para"thyroids. Many people with supposed "thyroid" issues are given mistaken diagnosis, too, when it is really associated with "parathyroid" adenomas. Thank you for taking this into consideration and good luck with your health progress!
    firebird56 14 Replies
    • November 10, 2010
    • 06:23 PM
    • 0
    Flag this Response
  • hi, what's your condition now? Regards
    Anonymous 42,789 Replies
    • November 12, 2010
    • 07:08 AM
    • 0
    Flag this Response
  • Since the parathyroidectomy I have had an amazing abatement of many of the symptoms (joint/bone pain, IBS/CV, overwhelming fatigue and brain fog are gone, improvement in nails, skin (but not hair loss, yet?), "fibro" gone, CFS gone, "depression" gone, "osteoarthritis" gone, elev bp down & a few others not mentioned--for those things I'm amazed AND grateful. Evidently, too many years of the extra circulating PTH and calcium in my system has impaired my renals. Upon angiography, it is showing a slight RAS (renal artery stenosis) and they say they do not know what has caused a rare condition of FMD (Fibromuscular Dysplasia) in the renal arteries, which results in a classic form of "beading". We also do not know why I have bi-lateral adrenal adenomas on each kidney. (Testing for pheocromocytomas is negative.) I still have "reduced output" and it frequently burns upon evacuation. My creatinine, BUN, urea nit, MO%, etc, are out of whack. I flew to Cleveland Clinic & consulted with a Nephro who was not concerned.My symptoms, discomfort and concerning test results were dismissed. Not any doubt in my mind, according to all available literature, that hyperparathyroidsm can lead to renal problems and even eventual failure.Thank heavens mine has not progressed that far and I am hopeful as I recover from HPT there will be no further damage. It appears only time may tell if there will be improvement. If there IS improvement, it certainly doesn't appear it will be with a doctor's assistance! Thanks for asking
    firebird56 14 Replies
    • November 12, 2010
    • 08:41 PM
    • 0
    Flag this Response
  • Hi, see a specialized doctor asap to diagnose your condition. Then share it with us. Glad to be with u here.Good luck!
    Anonymous 42,789 Replies
    • November 13, 2010
    • 03:25 AM
    • 0
    Flag this Response
  • update on my story, I had surgery at the end of last year. I had a robotic pyeloplasty which corrected my UPJ obstruction in my left kidney. As the doctor suspected, I did have not just one artery laying on my ureter, but THREE of them obstructing the ureter. I am now doing well and I no longer have UTI's, or any kidney pain. Hope my story can help someone!
    Anonymous 42,789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.

Signs of a Psoriasis Flare

Know the five types of psoriasis and how to spot flares.

How Diabetes Medications Affect Your Appetite

Newer diabetes treatments can suppress appetite and aid weight loss.

What to Do For Dry Mouth

Try these tips to get your salivary glands back into action.

The Painkiller – Constipation Connection

Constipation is a common side effect of opioid and narcotic pain medicines.

9 Signs of Sensitive Skin

Is it sensitive skin or something else?