Anyone w/ sponge or polycystic kidneys?

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Expand view Topic review: Anyone w/ sponge or polycystic kidneys?

Re: Anyone w/ sponge or polycystic kidneys?

Post by trish9 » Wed Jan 26, 2011 10:30 pm

I didn't have any swelling with the pre-e or HELLP. I did have some swelling postpartum, likely due to the IV fluids that they were giving me. My BP did rise some while I was reabsorbing that additional fluid, but it only lasted a few days. I did have a kidney biopsy to confirm my diagnosis. It was not much fun to go through, but honestly it was a piece of cake after everything else that I had been through.
I know that PCKD and sponge are pretty different (I have a friend with PCKD). With PCKD the cysts are bigger and there is protein in the urine. Any news on your 24 hour urine?
How are you feeling? Hope the palpitations are getting better. How often is the cardiologist going to see you?

Re: Anyone w/ sponge or polycystic kidneys?

Post by ktoves » Sat Jan 22, 2011 03:24 pm

I don't have hypertension right now my BP has been good and low around 95/65 so it's just being monitored. After the PP Preeclampsia it took 3 months to get the BP back under control and I was weaned off of Labetalol. My BP rose a little bit but stays low for the most part after weaning off labetalol and that was a year ago. I monitor my BP at home every night or whenever I have a bad headache because last time it was in a matter of hours when my BP shot up. Yes two weeks ago I did a 24 hour urine test and they're supposed to have the results back on Monday. The cardiologist ordered it so they could have a baseline. I'm assuming they will do another and more bloodwork later on in the pregnancy. I wonder why sponge kidneys leak protein, wbcs, and on mine there's nitrites and you name it. I agree from what I've read it shouldn't lead to kidney failure. The urologist wanted me to be on a daily antibiotic to keep infections out but I turned it down. I'm already allergic to several antibiotics and I worry it will just make things worse especially while pregnant. I too had no idea about my heart or kidneys going into my last 2 pregnancies. It wasn't until after my 2nd when they did bloodwork and ultrasounds did it show up. I grew up with bladder infections and palpitations/murmurs but nothing was ever said or done. After the PP Preeclampsia with my 2nd my heart showed moderate-severe leaking from all of the valves. My chest would hurt and I constantly felt palpitations it was so scary. Now the leaking is mild and so that's just something else to watch. I worry that my heart wont be able to handle a pregnancy to term or after delivery or through hypertension again. The palpitations have picked up since being pregnant and when I feel it in my chest I just mentally tell myself it will be okay. Drinking a lot of water helps. The cardiologist seems more worried about the kidneys but I'm more worried about my heart.

I could only imagine how painful that was and is, I am so sorry for the loss of your little boy. Preeclampsia and HELLP are unfair and cruel diseases. I feel lucky to have my two babies and I worry more than anything that this baby wont make it. I am hoping that if something goes wrong that it happens when this one is mature enough to survive. I wanted to ask, did you have any swelling/edema before your Preeclampsia/HELLP? 5 days after delivering my last baby my legs and feet ballooned. I had shortness of breath at the same time but was told it was normal and nothing was wrong with my BP. 5 days after that my BP shot up. I wonder if the swelling is a sign even when there is no high BP? Or if that's just kidneys doing that? Did the nephrologist do a biopsy on your kidneys to find out what was going on with them? My urologist calls my kidneys sponge kidneys and my cardiologist calls them polycystic kidneys, I don't think they're the same thing though.

Re: Anyone w/ sponge or polycystic kidneys?

Post by trish9 » Sat Jan 22, 2011 01:43 pm

I'm sorry about what you went through. I also did not feel very confident in my previous OB physician and felt that he pushed off my symptoms. I have found a new OB and MFM, who have worked with pre-e patients and patients with chronic kidney disease, and they have a plan to monitor me closely with a future pregnancy, along with my nephrologist. I think when someone has been through what we have, an OB with pre-eclampsia experience is a must. Do you have hypertension or are they just monitoring for it? From everything I have researched and been told my my kidney team, if you go into a pregnancy with reasonable kidney function (serum creatinine 1.4 or below, creatinine clearance 70 or better) and normal BP or well-controlled hypertension that the kidneys should be okay and pregnancy should not change the natural history of the kidney disease. Unfortunately that doesn't account for pre-eclampsia or HELLP which does have the potential to cause more stress and damage to the kidneys. Have they measured your kidney function with a 24 hour urine? From what I know sponge kidney disease does not usually result in loss of kidney function.
I went into my pregnancy with undiagnosed hypertension and kidney disease, so I feel kind of like I was behind the 8-ball from the beginning. While the pre-e/HELLP and loss of my son was devastating, I am fortunate that I did not lose any more kidney function and my BP is now very well-controlled on meds. In my case my body makes abnormally shaped IgA (immune complexes) that get "stuck" in the kidney and cause damage resulting in protein in the urine along with occasional red cells. I am fortunate to have a more "quiet" type of IgA nephropathy which is only slowly progressive and can go into remission. There are other people who will progress to kidney failure in a few years. No one knows what triggers the formation of the abnormal IgA :(
What did the cardiologist say about your heart? Is that doing okay??

Re: Anyone w/ sponge or polycystic kidneys?

Post by ktoves » Sat Jan 22, 2011 11:14 am

Hi! No I was diagnosed via ultrasound by the hospital then confirmed by my urologist. On the ultrasound it showed a lot of bubbles or "calcifications" inside the kidneys. I have bladder infections once every 2-3 months and so far have only had 1 kidney infection but no stones yet. There will be times it feels like I have a bladder infection but on a culture it comes back negative for bacteria but has a lot of white blood cells, red blood cells, etc. I saw a nephrologist before but he just said that sponge kidney is rare and not much to worry about. I now see a urologist periodically through this pregnancy just to touch base but oddly enough it's actually my cardiologist who really handles everything. He's worried about the kidneys going through another pregnancy and hypertension. He said he's known women who had it with pregnancy and that it isn't without it's complications. My bloodwork shows that everything is fine with the kidneys thus far. What is IgA nephropathy? My cardiologist is keeping a close eye on the BP and any new signs or symptoms which I'm thankful for. My ob doesn't say anything about it in fact I question if they really even check my urine for anything. On the 31st I'm going to pressure him to refer me to a high risk ob because I don't think he's capable of handling the pregnancy. I'm worried that in an emergency I'm going to be left high and dry. I asked him what am I supposed to do, as in who do I call and he just said his main number and that if he's not at work then he has backup doctors. I switched to him because my last ob swore up and down that in an emergency things would be handled however when I developed severe PP Preeclampsia he told me just to lay down at home when my BP was 180/106 when it's normally 90/65. I ended up going to the ER and by the time I got there I could no longer talk or see where to walk and my head felt like it was going to explode. I waited an hour in the waiting room and when they finally took me back the nurse said she was surprised that I didn't have a stroke or seizure right there in the waiting room. The ER doctors had no idea what was going on and my ob never even saw me when I was hospitalized. I'm hoping this time around that having a team of doctors will be better.

Re: Anyone w/ sponge or polycystic kidneys?

Post by trish9 » Fri Jan 21, 2011 08:45 pm

Hi I don't have medullary sponge or PCKD, but am familiar with both. Were you diagnosed via biopsy? I was diagnosed with IgA nephropathy in June 2009 and do spill protein routinely, although it is currently controlled on an ACE and ARB. Unfortunately there is not a large amount of literature out there for any of us with chronic kidney disease regarding pregnancy. My nephrologist, MFM and OB all agree (and available literature supports this) that the biggest risk for a poor pregnancy outcome is uncontrolled hypertension and rather than proteinuria. Are you following with a nephrologist routinely?

Anyone w/ sponge or polycystic kidneys?

Post by ktoves » Fri Jan 21, 2011 01:16 pm

I was wondering if any other women have had Preeclampsia with a kidney disorder? I have sponge kidney and from what I've been told is that it's very rare so therefore not fully studied. No one can say if it causes hypertension during pregnancy but I honestly think it does. Isn't a lot of your BP controlled by the kidneys? It makes it difficult with this pregnancy because from time to time there will be protein in my urine when I'm not pregnant. So far no protein yet while pregnant.