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

I'm finally back

Postby sarahkm » Fri Feb 18, 2011 04:34 pm

by sarahkm (86 Posts), Fri Feb 18, 2011 04:34 pm

Hello, I have been gone for too long...

My story:
Our son Nathanael was stillborn at 38 weeks, December 31, 2006, due to placental abruption and sudden development of HELLP syndrome. I had the worst class of HELLP (don't remember if that is Class 1 or not). My platelets and liver have since recovered but I was on dialysis for 3.5 months. My kidneys have mostly recovered but my Creatinine is still at 1.7 (normal is <1.0). It took about 1.5 years for my Creatinine to get to 2.0. Because of this my doctors advised me not to become pregnant again. I'm also still hypertensive but it is controlled with medication.

So, my husband and I started the process of domestic adoption. That was in Dec. 2007 and we are still waiting...we have been on a list for 2 years now.
We just applied to a different adoption agency and received a rejection letter today. So we'll continue with the same agency we have been working with for the last 3 years.

The thought of another pregnancy has crossed our minds a few times. The biggest concern is that my kidneys will worsen and I'll end up on dialysis again or even lose my life.
Do I dare think about getting pregnant again? We visited a MFM a few months after I delivered Nathanael and at that time he told us that he didn't want to run any of the blood tests recommended until my creatinine was below 2.0. Because we ended up choosing to adopt, we never did go back to talk with him.

Then there is the fact that I'm now 39 and that is another risk factor.

We are so frustrated now! Are there any of you out there that have gone through the decision of becoming pregnant again even though your kidneys were not 100%?
I'm currently on 2 BP medications and vitamin D supplementation.

Thanks. Sarah
Sarah (41)
Mother to Nathanael James born still 12/31/2006 at 38 weeks. Class I HELLP sydrome, placental abruption, acute kidney failure.
Miscarriage 12/2011
Expecting again-due date August 16, 2013 (Folic Acid, LDA, Prenatal vitamins, BP meds, Vitamin D, Slow release Iron)
Elias Nathanael born healthy 07/28/2013 at 37 weeks 2 days, 5#11oz. No signs of HELLP or preeclampsia! Tear noticed in placenta after delivery.
sarahkm
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Re: I'm finally back

Postby kerisue » Fri Feb 18, 2011 11:46 pm

by kerisue (623 Posts), Fri Feb 18, 2011 11:46 pm

I'm so, so sorry about Nathanael. Like you, I'm older, maternally speaking. I was also advised not to try and get pregnant again, although PE and my heart were the problems, not kidneys. Even so, that same heart is telling me to try once again. Since you've met your creatinine goal I think it would be worth it to at least meet with the MFM specialist again. Good luck, I really hope you are able to have a baby for keeps.
Mama to Millie
born June 2010 @ 24 wks. gestation due to my severe PE and CHF
lived 25 days, loved and missed
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Re: I'm finally back

Postby trish9 » Sun Feb 20, 2011 10:47 am

by trish9 (74 Posts), Sun Feb 20, 2011 10:47 am

Hi Sarah,
I'm so sorry about the loss of Nathanael.
I'm also on the "older" side at 38 so that combined with my history puts me at highest of high risk so I can empathize with your situation. I too have kidney problems, but due to an underlying kidney disorder. Did you have any kidney problems prior to the abruption/HELLP or was the renal failure caused by it? I have been working really closely with my nephrologist and he spent a lot of time going over the available research on pregnancy and kidney disease. Basically it comes down to creatinine at 1.4 or lower and creatinine clearance of 70 or better is thought not to be a major risk to a pregnancy or to be a big risk to have worsening kidney function due to a pregnancy. As the creatinine rises and the CrCl falls, the risks rise. I did see some case reports of women with very significant stage 4 kidney disease having a successful pregnancy, but sounds like they had a difficult time. Have you had a 24 hour urine or an iothalamate test to get an accurate measure of your clearance? Do you have hypertension?
Trish
Pre-eclampsia and HELLP at 23 weeks +2 days
My little love Alexander. Born and passed on January 3rd, 2010.
Underlying disorders: IgA nephropathy, chronic hypertension and Hashimoto's thyroiditis
trish9
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Posts: 74
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Re: I'm finally back

Postby trish9 » Sun Feb 20, 2011 10:49 am

by trish9 (74 Posts), Sun Feb 20, 2011 10:49 am

I'm sorry, I missed it in your post that you are hypertensive. What meds do they have you on?
Trish
Pre-eclampsia and HELLP at 23 weeks +2 days
My little love Alexander. Born and passed on January 3rd, 2010.
Underlying disorders: IgA nephropathy, chronic hypertension and Hashimoto's thyroiditis
trish9
Registered User
 
Posts: 74
Joined: Sun May 16, 2010 11:51 am

Re: I'm finally back

Postby sarahkm » Sat Mar 12, 2011 02:41 pm

by sarahkm (86 Posts), Sat Mar 12, 2011 02:41 pm

Trish,

Thank you for the information! I'm currently on a low dose of Diltiazem and Metoprolol. The metoprolol is the medication that seems to be the most important for me right now. The lowest my creatinine has been so far is 1.7. My creatinine has been below 2 for at least 2 years now. I haven't had a creatinine clearance done anytime recently. I have not had any protein in my urine though! For awhile I was on Calcitriol but now am just on Vitamin D supplement. My Vitamin D levels were very low.
We have an appointment with the MFM specialist on the 31st now and with my OB/GYN on April 13. I'll need to get blood testing done again soon. I'm due to see my nephrologist again also.
No, I didn't have any kidney problems prior to the abruption. My creatinine had been around 0.9 before pregnancy.

Thanks! Sarah
Sarah (41)
Mother to Nathanael James born still 12/31/2006 at 38 weeks. Class I HELLP sydrome, placental abruption, acute kidney failure.
Miscarriage 12/2011
Expecting again-due date August 16, 2013 (Folic Acid, LDA, Prenatal vitamins, BP meds, Vitamin D, Slow release Iron)
Elias Nathanael born healthy 07/28/2013 at 37 weeks 2 days, 5#11oz. No signs of HELLP or preeclampsia! Tear noticed in placenta after delivery.
sarahkm
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Posts: 86
Joined: Mon May 07, 2007 11:27 am

Re: I'm finally back

Postby trish9 » Sat Mar 12, 2011 09:23 pm

by trish9 (74 Posts), Sat Mar 12, 2011 09:23 pm

Hi Sarah,
That's great that your creatinine has been stable for two years, maybe the MFM and nephro will consider that a plus when discussing another pregnancy? Is Diltiazem a calcium channel blocker? That is what I am on now. I was able to be transitioned off my maintenance ACE and ARB (not baby safe) to Procardia XL 30mg once daily. I know how scary it is to consider another pregnancy because my nephro had the discussion with me about possible worsening of my kidney disease with pregnancy. However my disease may progress slowly over time anyway, so decided that I didn't want to live my life in fear of "what ifs" so we're going for it. My husband and I have also discussed adoption or maybe surrogacy (but probably can't afford it) too, but I have a really hard time giving up on the idea of having a pregnancy. I'm seeing my MFM on the 28th and keeping my fingers crossed. I hope that you get good news at your upcoming visit. Keep me posted on what you find out!
Trish
Pre-eclampsia and HELLP at 23 weeks +2 days
My little love Alexander. Born and passed on January 3rd, 2010.
Underlying disorders: IgA nephropathy, chronic hypertension and Hashimoto's thyroiditis
trish9
Registered User
 
Posts: 74
Joined: Sun May 16, 2010 11:51 am

Re: I'm finally back

Postby sarahkm » Sat Mar 12, 2011 10:44 pm

by sarahkm (86 Posts), Sat Mar 12, 2011 10:44 pm

Trish,

What is your Creatinine now? Best wishes on your visit! Have you ever been on dialysis? Yes Diltiazem is a calcium channel blocker as is metoprolol. I think my nephrologist just wanted to regulate me on meds that can be used during another pregnancy.

Sarah
Sarah (41)
Mother to Nathanael James born still 12/31/2006 at 38 weeks. Class I HELLP sydrome, placental abruption, acute kidney failure.
Miscarriage 12/2011
Expecting again-due date August 16, 2013 (Folic Acid, LDA, Prenatal vitamins, BP meds, Vitamin D, Slow release Iron)
Elias Nathanael born healthy 07/28/2013 at 37 weeks 2 days, 5#11oz. No signs of HELLP or preeclampsia! Tear noticed in placenta after delivery.
sarahkm
Registered User
 
Posts: 86
Joined: Mon May 07, 2007 11:27 am

Re: I'm finally back

Postby trish9 » Sun Mar 13, 2011 09:04 pm

by trish9 (74 Posts), Sun Mar 13, 2011 09:04 pm

My creatinine is 1 to 1.1, although I had a few readings of 1.2 back when I was on the ACE inhibitor. No I was never on dialysis, my creatinine went up to 1.4 when the pre-e was at it's most severe, but my protein shot up from 3 grams to 7. I admit that the fear of dialysis or a kidney transplant grabs a hold of me when I think about getting pregnant again. My husband is really scared of this happening. How is your hubby handling the idea of another pregnancy?
Trish
Pre-eclampsia and HELLP at 23 weeks +2 days
My little love Alexander. Born and passed on January 3rd, 2010.
Underlying disorders: IgA nephropathy, chronic hypertension and Hashimoto's thyroiditis
trish9
Registered User
 
Posts: 74
Joined: Sun May 16, 2010 11:51 am

Re: I'm finally back

Postby sarahkm » Mon Mar 14, 2011 09:37 am

by sarahkm (86 Posts), Mon Mar 14, 2011 09:37 am

My hubby is as worried as I am. We just need to have a long conversation with the MFM, nephrologist, and my OB. Dialysis really messes up your way of life, having to sit in a chair for 2 to 3 hours, 3 days a week. Having to plan your vacations around your dialysis schedule and setting up visits for dialysis at other locations. Not to mention the fact that you are really tired afterwards.

Thanks! Sarah
Sarah (41)
Mother to Nathanael James born still 12/31/2006 at 38 weeks. Class I HELLP sydrome, placental abruption, acute kidney failure.
Miscarriage 12/2011
Expecting again-due date August 16, 2013 (Folic Acid, LDA, Prenatal vitamins, BP meds, Vitamin D, Slow release Iron)
Elias Nathanael born healthy 07/28/2013 at 37 weeks 2 days, 5#11oz. No signs of HELLP or preeclampsia! Tear noticed in placenta after delivery.
sarahkm
Registered User
 
Posts: 86
Joined: Mon May 07, 2007 11:27 am

Re: I'm finally back

Postby trish9 » Fri Mar 18, 2011 12:53 am

by trish9 (74 Posts), Fri Mar 18, 2011 12:53 am

I'm glad that you improved and do not have to be on dialysis now. I can only imagine how hard that must be. I hope we both get good news at our upcoming appointments. Keep me posted!
Trish
Pre-eclampsia and HELLP at 23 weeks +2 days
My little love Alexander. Born and passed on January 3rd, 2010.
Underlying disorders: IgA nephropathy, chronic hypertension and Hashimoto's thyroiditis
trish9
Registered User
 
Posts: 74
Joined: Sun May 16, 2010 11:51 am

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