Want to try again/Pre-e/HELLP underlying kidney dx

Have you suffered from HELLP syndrome or had a pregnancy complicated by an underlying disorder? Discuss your concerns here

Want to try again/Pre-e/HELLP underlying kidney dx

Postby trish9 » Sun May 16, 2010 12:08 am

Hi everyone. I'm new to this forum. I was found to have kidney disease when I went for my first prenatal visit back in Sept 09. No reason to have suspected it before. I was healthy and last regular physical was fine, although I had borderline BP (140/92) which was attributed to me being overweight. Anyways I ended up with Pre-e/HELLP at 23 weeks and had to be induced. Little Alexander was stillborn. My husband and I would like to try again. I have a glomerular disorder with HTN. BP is now well-controlled (100s over 70s) and proteinuria is continuing to fall, now around 1000 (at its worst it was 7000). Creatinine is 1 and GFR is around 62. Anyone on this forum with a similar history? I have a wonderful nephrologist. But I am looking for a good MFM specialist. I know you can't post names on the forum. But if anyone could email me some suggestions. I'm in Jacksonville Florida, but can travel to Orlando,Gainesville, Tampa area if needed. I also have family in Cleveland and we are considering relocating if we have to to find a good MFM specialist who can manage me. So glad to have found this wonderful forum!
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Re : Want to try again/Pre-e/HELLP underlying kidney dx

Postby jules2 » Mon May 17, 2010 09:10 am

Hi Trish,

My daughter was also stillborn at 26 weeks due to severe PE, and I had HELLP after delivery.

I have been diagnosed with stage 2 chronic kidney disease, my GFR is about the same as yours. I don't have a diagnosis though; my renal specialist has not been able to find one; they think it might be congenital; I just have one small kidney with markedly reduced function.

Like you, no-one suspected this before pregnancy / PE. I do not routinely spill protein and do not have high BP (generally about 125/75). So actually it wasn't suspected or discovered until after the stillbirth.

I am now 8 weeks pregnancy again and hoping for a better ending (though terrified).
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Re : Want to try again/Pre-e/HELLP underlying kidney dx

Postby jenmatt1 » Mon May 17, 2010 07:20 pm

I don't have the same kidney issues, but I did suffer from HELLP. I was lucky that it came on at 34 weeks and daughter healthy, but I am pregnant now and I am terrified. I am only about 6 weeks now, but I am glad I tried one more time. Everytime we decided to try to conceive (we have had miscarriages as well), I have been scared. But even after HELLP and miscarriages, I still go back to wanting another baby.

I think you have to decide what is best for you and your family. For me, this is our last try- we have had too much heartbreak with the miscarriages, but I am sure if I didn't already have my 2 year old, I would probably still try.

I have a lot more knowledge about HELLP and PE now and I think that will help me once I get past the 20 week stage this time.

Lots of baby dust to you
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Re : Want to try again/Pre-e/HELLP underlying kidney dx

Postby kvirl » Tue May 25, 2010 09:50 pm

Hi Trish: I have kidney disease now because of HELLP, not prior to (just moved up to Stage 3!! GFR at 34%. Creatinine finally down to 1.8 or so - YEAH!!!!). Your question is difficult to answer (as are all questions on these forums since no one knows why HELLP) because your kidney disease was prior to HELLP. Hopefully your nephrologist was able to give you a diagnosis because, from what I understand from my nephrologist, there are certain types of kidney disease that can be aggravated by pregnancy. So, it would be good to know if you have such type of kidney disease. And if so, then what your nephrologost recommends. Maybe you already know? I was told by my high-risk OBGYN that if I were to try again and get pregnant, we would need to develop an "escape plan" in case HELLP reared its head again as she does not want my kidneys affected further. With only 34%, can't have too much affected! I have a wonderful high risk OBGYN but she is in San Francisco. If anyone else wants her name, you can email me. I will ask a friend re Cleveland and get back to you. I'm sorry, but I do not have any leads re Florida.
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Re : Want to try again/Pre-e/HELLP underlying kidney dx

Postby trish9 » Mon May 31, 2010 10:13 pm

Hi Kristin, Thanks for replying, it's helpful to know that there are others going through similar circumstances - but wish none of us had this common bond! I am on my way to having a diagnosis - hopefully. I am set to have a kidney biopsy the second week of June and maybe this will give us some more information. I'm hoping this will give us an idea as to the progression rate to expect of my kidney disease. I figure that if I am going to attempt another pregnancy that I should do so while I have reasonable function. Has your nephrologist been encouraging if you would like to try again?
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Re : Want to try again/Pre-e/HELLP underlying kidney dx

Postby ilovepie » Tue Jun 01, 2010 01:21 pm

I have idiopathic membranous glomerulonephritis, diagnosed in 1997. I was extraordinarily lucky in my first pregnancy, and am told the outcome will most likely be very similar with my current pregnancy.

I was on therapeutic medications for a decade before I got pregnant. I've been off of them since July 2008 when I got pregnant with my son, though there was some discussion of putting me back on them until I became pregnant with this baby. Some would probably tell you to try a course of immunosuppressives to see if you could be put into remission before pregnancy. (Something I was actually about to start when I found out I was pregnant with my son!) The main factors in recommending for/against pregnancy for my nephrologist and all the other specialists I talked to on the MFM/OB side were that my blood pressure was well-controlled and my labs (kidney function and proteinuria) were stable in the time leading up to pregnancy.

Also, I at one point had a nephrologist who was sort of alarmist. He told me he would not treat me if I became pregnant. He was very comfortable treating elderly patients, but a woman of childbearing age was really scary for him. So your nephrologist will definitely matter - mine has been wonderful working with my OB both pregnancies and laying out pros and cons of medications (though the two doctors disagree about what I should be on).

I have lived in Cleveland, so I know a wonderful nephrologist there (though I saw him in college, so I can't be sure how he is in helping manage a pregnancy - I assume as awesome as he is otherwise!), but I do not know any MFMs. I could get some referrals, though, if you'd like - a friend of mine is in residency at Rainbow Babies, and I'm sure she knows MFMs.

I hope that your kidney biopsy is uneventful. I assume they're doing it with you under conscious sedation, which is quite a trip! Feel free to PM me - I'll give you any perspective and referrals that I can!
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Re : Want to try again/Pre-e/HELLP underlying kidney dx

Postby trish9 » Tue Jun 01, 2010 01:48 pm

Thanks so much for sharing your story. It's good to hear of someone with chronic kidney disease having a successful pregnancy - there isn't a whole lot about us out in the literature! I think you hit on a key point that your kidney disease and blood pressure was well-controlled and stable going into pregnancy. My blood pressures were terrible beforehand (150-160s over 90-100) and it was written off as being due to stress and overweight. I don't blame my primary doctor, I should have been more persistent in having it worked up. So essentially I went into the pregnancy with uncontrolled hypertension and then the kidney disease was discovered. My nephrologist has worked with women of childbearing age, including renal transplant patients who have become pregnant, so he feels okay working with me. Unfortunately the OBs that I saw had never had a patient with kidney disease and only 2 with early pre-e! - so they weren't really comfortable treating me at all. My pressures kept climbing and they were really reluctant to increase my medication. I'm hopeful to get a diagnosis by biopsy and get a good management plan going. I will try to send a PM. I would be interested to know how you have been dealing with the diagnosis of kidney disease - it's still really new and pretty scary to me!

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Re : Want to try again/Pre-e/HELLP underlying kidney dx

Postby ilovepie » Tue Jun 01, 2010 02:08 pm

quote:
Originally posted by Trish9

It's good to hear of someone with chronic kidney disease having a successful pregnancy - there isn't a whole lot about us out in the literature!


[/quote]

I know! It's very frustrating!! Actually, there is about to be a case study published on DS and me (about breastfeeding - there's even less in the literature about that!).

If the PM doesn't work, you can email me at MommyBeeya@gmail.com
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