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26-yr-old male, hematuria associated with polycystic kidneys

I am a 26-year old male with autosomal dominant polycystic kidney disease (hereafter abbreviated as PKD). Should I be concerned about gross hematuria persisting for 6 days, and should I be taking any action? This is the first time I have experienced prolonged gross hematuria. I was not experiencing pain until today, when I experienced fleeting dull throbbing pain on my right flank.

Several doctors have recommended that I follow up with a urologist and nephrologist, but the urologist I saw today dismissed my concerns and was defensive when I began asking questions about his recommendation that I simply drink more water and wait to see what happens. I asked at what point continued bleeding would concern him (a week? two weeks? a month?) and he would not give me a straight answer. I have also been experiencing unusually high blood pressure, which I believe is related to my kidney disease. As recently as November 2014 my blood pressure was within normal range (136/82) but quite suddenly it is now quite high (averaging 155/110).

Detailed information about my hematuria and doctors:
I observed frank red blood in my urine (quite dark) on the evening of 4/18. When it persisted for over 24 hours I visited the emergency room. The attending physician, after learning of my family history of PKD, ordered a CT scan with contrast; he observed many cysts on my kidneys and indicated that he was certain the bleeding was caused by cysts bleeding into my kidneys. He recommended a follow up with a nephrologist within 48-72 hours.

Abnormal results from the urinalysis done in the E.R. are as follows:
RBC/HPF: 20/HPF (high) - reference range: 0-3/HPF
WBC/HPF: 7/HPF (high) - reference range: 0-3/HPF
Blood: large mg/dL (abnormal) - reference range: negative
Protein: 30 mg/dL (abnormal) - reference range: negative
RDW - SD: 36.3 fL (low) - reference range: 37.2 fL - 47.7 fL
Bacteria: 3+/HPF (abnormal) - reference range: none
Glucose level: 127 mg/dL (high) - reference range: 65 mg/dL - 115 mg/dL
  *Note, I had just eaten before going to the E.R.
Sodium level: 135 MMOL/L (low) - reference range: 136 MMOL/L - 145 MMOL/L
MCH: 27.6 (low) - reference range: 27.7 pg - 33.5 pg
MCV: 82.5 fL (low) - reference range: 82.9 fL - 97.7 fL

On 4/20 I attempted to schedule an appointment with a nephrologist. He reviewed my records and said it was urgent that I see a urologist first to address the bleeding. In the meantime, I was still experiencing gross hematuria. There was so much blood in my urine that it appears to separate into layers - it appeared as though the blood congealed in the bottom half of the bowl, leaving urine in the top half. I also observed an oily substance floating on top, which I suspect is the protein identified by the E.R. urinalysis.

On 4/21 I visited my PCP to get a referral to a urologist. At that time, he indicated that I should definitely see someone before the end of the week (4/24) and that he would have someone schedule an appointment for me. He also prescribed 100mg of Losartan taken once daily for hypertension. I was instructed to take half-doses for a week and, if I saw no improvement, to begin taking the full dose. That afternoon I was no longer observing gross hematuria, though my urine looked like a very light tea color. It also still appeared to have a separation of more dense, slightly darker liquid settling at the bottom of the bowl. The oily substance floating on top was also present.

On the morning of 4/22, gross hematuria was again present. It was brighter red than before, but the density and separation was still visible. The hematuria persisted all day. The oily substance floating on top was also present.

On 4/23 my urine became rosy-colored and was more uniform in density, but did still settle into layers after sitting for a short time. By the end of the day, my urine was again the color of light tea, with the same density separation as before. The oily substance floating on top was also present.

Today, 4/24, my urine was dark brown and also separated into layers as before. The urologist, as I said before, was dismissive of my concerns. He could not explain the reason for the change in my hematuria to my satisfaction, nor did he adequately answer my question of when continued bleeding would become of concern to him. He took a urine sample but did not perform a new scan of my kidneys, despite the E.R. scan being 5 days old at this point. I asked if the fact that I wasn't experiencing pain should worry me, since family members with PKD and literature on PKD indicate that hematuria is often accompanied by pain described as excruciating. He also failed to adequately answer that question.
This urologist suggested that I return to my normal routine - taking it easy, of course - and to not remain on bed rest as I have done for the past 5 days. He recommending increasing my water intake, which I have also been doing for the past five days.

After leaving his office I returned home, took a nap, and then had my wife drive me to a short, uneventful meeting where I remained seated the entire time (taking it easy as instructed). On the way back home we stopped at the grocery store and slowly made our way around to pick up a few things. After about 10 minutes I began feeling a throbbing, dull pain on my right flank - the first pain I have felt throughout all of this. We left immediately to return home. The pain subsided quickly, but when I urinated shortly after arriving at home, gross hematuria is again observable. It looks dark red and separates according to density, similar to the first day of bleeding. The oily substance floating on top is also present.

To summarize, I was very put off by the urologist's defensiveness when I began asking questions and don't know if I should trust that his recommendation to do nothing is the appropriate course of action. I would very much prefer that doing nothing is the right course (as I'm not particularly thrilled about the idea of anything invasive); however, I also do not want to do nothing if I should be taking some other action.

Given the information I have provided, should I be concerned about doing nothing or is that truly the best option at this point? If gross hematuria continues, at what point should I be concerned (keeping in mind that I have PKD)? Is the protein in my urine something I should address immediately, or is that not uncommon with PKD accompanied by hematuria? If I am just now experiencing pain, fleeting though it was, should I be concerned that I was told to do nothing?

If you need any additional information I am happy to provide it. Thank you in advance.
1 Responses
Avatar universal
I wish I could be of assistance but my knowledge of PKD is severely lacking. But, based on my experience with hematuria, I'm surprised that your doctors are so dismissive! You need a kidney specialist, a urologist isn't sufficient.

I see quite a variety of doctors, and when any of them sees blood in my urine analysis, they always tell me to see my kidney doctor, immediately. Nobody has suggested I wait to see what happens. I do have a good nephrologist who does see me on short notice, so I'm fortunate. So I hope you can get one asap.

Hope things get straightened out for you.
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