Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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others' experiences when first diagnosed

I'm reaching out to hear what others experienced when they were first diagnosed. I have been having problems with episodic hypertension for a few years now. My bp is typically 80s/40s. During an episode, I get incredibly weak and bp shoots up to 130s/90s. All of my problems started with urine retention that led to self-cathing for a week. Finally, with enough complaining of right kidney pain my provider decided to run some tests. I have blood in my urine, a GFR of 82 (I'm 35), an MRI showing "scattered cysts bilaterally", one hepatic cyst/biliary hamartoma, and a ureter that doesn't opacify. One renal cyst is 8mm the rest 5mm. My provider had no idea what was going on so she referred me to a urologist, who I see Thursday.


I guess I am just wondering if this sounds familiar to anyone. I would love to frolic in the simple cyst region, but it wouldn't explain any of my other symptoms. Thoughts?

Replies

ToughGirl
ToughGirl

High Blood pressure is one side effect of PKD. These PKD cysts can be on different parts of your body. I have several on my gall bladder and liver. If this is indeed Polycystic kidney disease I would strongly suggest you seek a doctor in nephrology familiar with PKD. With a GFR of 82 you already have a mild decrease in your kidney function.
Hope you find some answers. Good luck.
Chewitt
Chewitt

Hi Apey,

Numerous bilateral cysts does suggest the possibility of PKD, but there are other cystic kidney diseases (see here:http://emedicine.medscape.com/article/453831-overview)
PKD is by no means certain, therefore, but it is unlikely to be simple cysts as these tend to be 1 or 2 in number. On the other hand, PKD can cause cysts on other organs such as the liver (I have an unusually extreme version of this and my liver is enormous owing to the presence of so many cysts).

Your usual BP is very low, so that is a bit of a mystery. PKD often causes enduring high BP. I have not heard of urinary retention being a problem with PKD either, so clearly something else is going on to cause this such as blockage of the ureter. I'm actually wondering whether you might have medullary sponge kidney.
https://www.niddk.nih.gov/health-information/kidney-disease/children/medullary-sponge-kidney
The urologist may have some pointers for you, but as has been said previously, I would imagine that you will need to see a nephrologist as well.
Apey
Apey

Hi, guys. Thank you for your responses. I saw the urologist today. He said he wasn't concerned about the many cysts or my gfr. He said my cysts would be huge if it was pkd. I thought well surely they don't start out large. He said I didn't need to worry about it and maybe try a GI doctor for the pain. I'm truly at a loss. My main worry is this being a real problem that's being dismissed due to my cysts still being small. I don't wish to have something serious as pkd. I just want answers for my sky rocketing bp and constant pain. My first lesion found in 2009. Now I'm full but they're tiny. Is it really normal to have many renal cysts and a hepatic cyst? I'm just lost.
Chewitt
Chewitt

Hi Apey,
A normal kidney can have up to 5 cysts. Any more is abnormal, though not necessarily serious. This may help clarify a little:
http://www.kidney.org.uk/help-and-info/medical-information-from-the-nkf-/medical-info-kidney-disease-symptoms/medical-info-kidney-disease-cysts/
One hepatic cyst is not unusual, however. Urologists are not the best people to see about kidneys. I saw a urologist at the start of the diagnosis process and he told me I needed to see a Nephrologist. This is what I would suggest that you should do. The urologist is wrong to say that cysts have to be huge for it to be PKD; they can be any size at all. This could still be PKD or Medullary sponge/cyst kidney but will not necessarily lead to kidney failure. See a nephrologist.
Apey
Apey

I can't see a nephrologist without the urologist saying it is necessary (Tricare works that way, apparently). I have moved on to maybe finding a reason for my sporadic blood pressures. I wouldn't be concerned except I get extremely weak when it rises. I go from 139/90 to 73/42. Most of the time I am 80s/40s. My NP sees no reason to investigate. I never had problems until I took fludrocortisone. Who knows. At this point, I am just going to wait until my issues become obvious. I still worry about my kidneys, but I think if anything my low bp will keep it at bay.
Chewitt
Chewitt

Hi Apey,
Since your urologist suggested a GI doctor, could you perhaps go down that route and then see whether the GI doctor will refer you to a nephrologist? It's tortuous but may be a solution. Are you still taking Fludrocortisone? If it is for problems with the adrenal glands, this may explain the low BP apparently. From what I can see, it can have many possible side effects. As you say, if you have PKD (and it's quite a big if), low BP is in your favour. Hopefully you will remain stable and not be too troubled by these issues.
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