I'm finally back

Have you suffered from HELLP syndrome or had a pregnancy complicated by an underlying disorder? Discuss your concerns here
kvirl
Registered User
Posts: 13
Joined: Sun May 16, 2010 00:07 am

Re: I'm finally back

Postby kvirl » Mon Mar 28, 2011 02:34 pm

Hi Sarah:

I'm in the suburbs of the Bay Area, in Marin. I used to live in the suburbs of Chicago when I was in the second grade - Lincolnshire somewhere. I loved it! We had a natural ice-skating rink in the winter right in our backyard!

I remember my nephrologist telling me that sometimes he likes keeping blood pressure a bit "higher" in the initial stages b/c it can kick start the kidneys. My first BP meds were labetelol and amlodipine (this one I could feel work immediately!). Then I was just on labetelol and now just the ace-inhib.

By the way, are you on any food/liquid restrictions?

I can't believe your GFR is right where I am. Thank you so much for posting!!! We may be like the only people in this $#@#$ boat!!! I've tried researching but I can't find anything re HELLP + severe kidney failure + having another baby.

Please keep me posted & I'll definitely post after our visit this Friday.

Kristin

ps, I'm 37 turning 38 this year. I was 36 when all this went down & right before my 37th birthday. I was (still trying to be) pretty healthy, i.e. ate well, exercised (now, even though I know I should b/c that is probably the only reason I'm alive...I'm a bit adverse to exercise), etc., etc.

sarahkm
Registered User
Posts: 88
Joined: Mon May 07, 2007 11:27 am

Re: I'm finally back

Postby sarahkm » Mon Mar 28, 2011 12:50 am

Kristin,

I'm a numbers girl too. I dug out my paperwork this AM and in 5/2010 my creatinine was 1.7 and my GFR was 36%. That is the best it has been. In October 2010 my creatnine was 1.9 and GFR 31%. I attribute the worsening due to my blood pressure not being controlled after I was taken off of toprol last summer. I've been back on toprol since Dec. 2010 so I hope my numbers are looking better again. I don't really understand why my nephrologist has something against toprol. His colleagues seem to wonder why I'm not kept on toprol...Hmmmm
I also was put on Vitamin D supplementation after my Vitamin D was measured in 1/2010 and was at 13. Normal is 30-100. I managed to get my number up to 34 but it slid to 29 in October. I admit I've had trouble wanting to take so many pills per day! Right now I alternate taking a multivitamin with 2000IU of Vitamin D and Citracal. I need to improve!!
Before I was on Vitamin D, my nephrologist had me on Zemplar (calcitriol) to keep my PTH levels down(?).
What BP meds were you on before the ace inhibitor? I initially was on Labetolol which is really the standard for HELLP patients, for 2 months while I was on dialysis. It didn't seem to control my BP and I was having trouble keeping it down each morning. Finally one of the nephrologists noticed at one of my dialysis sessions that by BP stunk (systole was around 150-160) and started me on toprol instead. I think it made a world of difference and my creatnine levels seemed to drop quicker. I wonder if that first 2 months of bad control really led my kidneys not to fully recover... :-(

Anyway, I'll definitely write after our appt. on Thursday afternoon!
Where do you live? I'm in the far west Chicago suburbs.

Take care, Sarah
Sarah (43)
Mother to Nathanael James born still 12/31/2006 at 38 weeks. Class I HELLP sydrome, placental abruption, acute kidney failure.
Miscarriage 12/2011
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.
Expecting again (another boy!), due date 10/17/2015 but will be induced around September 25. No concerns at this time other than low iron. On low dose aspirin, iron infusions, vitamins, metoprolol, Vitamin D.

kvirl
Registered User
Posts: 13
Joined: Sun May 16, 2010 00:07 am

Re: I'm finally back

Postby kvirl » Sun Mar 27, 2011 06:09 pm

Hi Sarah:

I would love to know your GFR b/c I'm a #s girl! 39% is considered low end Stage 3 CKD; always hoping for more. I've just started doing Qigong - a visualization-movement of Traditional Chinese Medicine. Hoping Eastern will take over from where Western has stopped!

My creatinine went to 1.49 after a year from like 12 or some other astronomically horrible number like that.

My nephrologist just put me on Ace Inihib after this last visit in Dec b/c it helps with the scar tissue in the kidneys. He knows we are thinking of trying again and said that it would be "ok" provided that I stopped taking it as soon as I found out I was pregnant. However, I haven't meet with my OB yet and she doesn't know that I'm on that drug now. I'm sure she'll say, "* No!".

I had massive blood loss as well - I think 8 transfusions - which really puts you at a disadvantage for a transplant. My nephrologist did not connect that to my kidney failure. He believes that the kidney failure was strictly due to HELLP based on all my lab work etc. He's "very surprised" my kidneys "woke up" because "they" (who know, it could be only one working overtime) took so long to perk up.

My appt is this Friday coming up - will let you know what she says.

I was really glad to see your post because not many women have the kidney component, which complicates everything even further. My "OB" is I think an MFM but I don't fully understand that acronym: Maternal Fetal ??.

Take care & will keep you posted!

Kristin

sarahkm
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Posts: 88
Joined: Mon May 07, 2007 11:27 am

Re: I'm finally back

Postby sarahkm » Sun Mar 27, 2011 05:27 pm

Kristin,

Thank you so much for writing! How long did it take to get your creatinine back to 1.49? I don't remember what my GFR is, I'm due for blood testing again and will be digging out my previous results this week for our visit with the MF specialist.
I somehow made it 38 weeks with Nathanael and had a normal(?) prenatal visit 48 hours before the tragedy occurred. Our first visit with the MF specialist was probably 6 months after our loss. He said that my creatinine needed to drop below 2.0 before he did any of the special blood tests on me (phospholipid A, etc.). It has been at least 2 years since my creatinine dropped below 2.0. We were set on adopting (and are still waiting)by then so I never went back to the MF specialist. He also stated that he couldn't tell if the kidney failure was due to the massive blood loss or the HELLP. I had about 4 to 5 transfusions while I in the hospital.
My nephrologist has kept me off ACE inhibitors I think because he wanted me to stay on medication that was safe if I happened to decide to become pregnant again. As I think I mentioned, I'm on diltiazem and metoprolol. I'm due to talk with my nephrologist again. He took me off metoprolol for a period of time last year and it caused me to become unregulated.

How did your OB appointment go? I have an OB that has basically told me not to get pregnant again...but I think he'll work with me, the nephrologist, and MF doc if I do become pregnant.

Take care! Sarah
Sarah (43)
Mother to Nathanael James born still 12/31/2006 at 38 weeks. Class I HELLP sydrome, placental abruption, acute kidney failure.
Miscarriage 12/2011
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.
Expecting again (another boy!), due date 10/17/2015 but will be induced around September 25. No concerns at this time other than low iron. On low dose aspirin, iron infusions, vitamins, metoprolol, Vitamin D.

kvirl
Registered User
Posts: 13
Joined: Sun May 16, 2010 00:07 am

Re: I'm finally back

Postby kvirl » Sun Mar 27, 2011 12:23 am

Hi Sarah,

I had a very similar experience to yours in Oct. 2009: HELLP w/placental abruption at 26 weeks (I think, I always get confused with the weeks - basically was at very end of 2d trimester, about to begin third), lost our little one, and had that unfortunate additional complication to HELLP: kidney failure. I was on dialysis for 2months. My GFR is now at 39% with creatinine at 1.49. I'm on 12.5mg Lorsartan (ACE inhib) for the kidney disease as BP is now back under control, 2K iu Vitamin D and a multi-vitamin.

The great debate is do we or do we not try again. We have an appt with our OB this Friday coming up (April 1st - appropriate?). My nephrologist advises that since the kidney disease was caused by HELLP not an underlying disease, then it is likely my kidney function should not worsen PROVIDED that HELLP does not reappear. So, that is the question: how likely is HELLP to reappear.

At my first appt with my OB after all * broke loose, she advised that I had a 30% chance. However, I don't remember if she meant HELLP or Pre-Eclampsia. I figure I'd definitely get Pre-E but HELLP, again?

So, we will see what happens after we speak with her. I really want my OB and Nephrologist to speak together.

I'm very, very worried about all of this. My greatest fear is that the exact same thing will happen and then what? We still do not have our little one and now I'm on dialysis permanently, waiting for a transplant.

Sincerely,
Kristin

trish9
Registered User
Posts: 74
Joined: Sun May 16, 2010 11:51 am

Re: I'm finally back

Postby trish9 » 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

sarahkm
Registered User
Posts: 88
Joined: Mon May 07, 2007 11:27 am

Re: I'm finally back

Postby sarahkm » 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 (43)
Mother to Nathanael James born still 12/31/2006 at 38 weeks. Class I HELLP sydrome, placental abruption, acute kidney failure.
Miscarriage 12/2011
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.
Expecting again (another boy!), due date 10/17/2015 but will be induced around September 25. No concerns at this time other than low iron. On low dose aspirin, iron infusions, vitamins, metoprolol, Vitamin D.

trish9
Registered User
Posts: 74
Joined: Sun May 16, 2010 11:51 am

Re: I'm finally back

Postby trish9 » 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

sarahkm
Registered User
Posts: 88
Joined: Mon May 07, 2007 11:27 am

Re: I'm finally back

Postby sarahkm » 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 (43)
Mother to Nathanael James born still 12/31/2006 at 38 weeks. Class I HELLP sydrome, placental abruption, acute kidney failure.
Miscarriage 12/2011
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.
Expecting again (another boy!), due date 10/17/2015 but will be induced around September 25. No concerns at this time other than low iron. On low dose aspirin, iron infusions, vitamins, metoprolol, Vitamin D.

trish9
Registered User
Posts: 74
Joined: Sun May 16, 2010 11:51 am

Re: I'm finally back

Postby trish9 » 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


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