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Re: I'm finally back

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

by kvirl (13 Posts), 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
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Re: I'm finally back

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

by sarahkm (86 Posts), 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 (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.
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Re: I'm finally back

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

by kvirl (13 Posts), 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
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Re: I'm finally back

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

by sarahkm (86 Posts), 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 (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 kvirl » Mon Mar 28, 2011 02:34 pm

by kvirl (13 Posts), 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.
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Re: I'm finally back

Postby sarahkm » Thu Mar 31, 2011 03:05 pm

by sarahkm (86 Posts), Thu Mar 31, 2011 03:05 pm

Hello again,

Just got home from our MFM doc visit. So, I'm going to hopefully get all my thoughts down in a coherent manner. Just a lot of information to take in. He said a lot of things I already know, so that made it easier.

So, if I understood correctly, he said that I likely have a 50% chance of getting preeclampsia again since I'm currently hypertensive (controlled) and have chronic kidney disease (CKD). What I found interesting is that my creatinine will most likely drop more during pregnancy due to the increased perfusion to the kidneys but then will go back to my baseline after delivery. So my kidneys are really only at risk for getting worse if I develop preeclampsia.
They usually have hypertensive patients on labetelol and/or another medication I'm not familiar with when they are pregnant, but he said some patients have been on metoprolol for an entire pregnancy and done well.
He said he is not one to discourage another pregnancy, but is cautious to give me a go ahead since I'm hypertensive and have CKD.

The good news is that I have access to a fabulous hospital and tons of specialists in this area, which is why I think my life was saved in the first place! The MFM assured us that they would form a team around me to get me through the pregnancy.

If I do decide to get pregnant again, then before conception I'd need to be transitioned to labetelol and the other medication if possible, would need to go through extended blood testing and urine testing including:
prothrombin gene mutation 20210
antibodies to phospholipids
coagulation panels
mutation of PAI-1 gene
Anticardiolipin antibodies
24 hour urine testing-creatinine clearance right?
etc., etc.

Once I'm pregnant, then I start getting regular ultrasounds every 4 weeks starting at 6 to 8 weeks gestation, then I think weekly with doppler flow after 20 weeks? The doppler will check the blood flow to the placenta and measure uterine arterial flow.

If I start showing abnormalities on ultrasound or with BP, then they would most likely not try to push for a few more weeks before delivery like they would with patients who don't have preexisting hypertension and CKD. They would have me get steroid injections at least.

So, I have a lot to think about. I have appts. with my nephrologist and OB/GYN on April 13th and 14th to get their view on things.

Trish, how did your appointment go?

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 » Fri Apr 01, 2011 09:36 am

by trish9 (74 Posts), Fri Apr 01, 2011 09:36 am

Hi Sarah,
A cautious yes from your MFM is good news! My MFM said that if she was just looking at my risk of PE based on my current kidney disease, she would say it was about a 1/3 chance of getting it. However due to my previous history of early severe PE, she puts the risk at about 2/3 but can't predict if it would be early again or later. I'm kind of sad about those odds, but I understood that was probably the situation even before I had this visit. She did say that in my favor, the blood pressure and kidney disease have been well-controlled and my hypothyroidism is being treated (last time I didn't know about any of these issues until after I was pregnant) which may result in a better outcome. So like your MFM, she gave a cautious yes. I had the same labs drawn as you did and am waiting for the results which should be in on Wednesday. I already had the anticardiolipin labs done a few months ago and those were negative. I also did a repeat 24 hour urine for creatinine clearance and protein and am waiting for that result. I am already on daily ASA which she agreed with. We also talked about starting Lovenox, particularly if my proteinuria is above 1.5 grams (which it most likely is since I am off the ACE and ARB meds) as this could put me at risk for clotting. She was also happy with me being on Procardia for my blood pressure. She did say that if I need a second agent down the line that she would choose Labetalol. She said that both she and my regular OB will be watching me like a hawk. They will plan to alternate visits so I will be seen every 2 weeks. Ultrasound will start at 6 weeks with doppler starting at 12 weeks mainly because of the fact that I had PE so early last time.

My nephrologist has already given me the go ahead. We did talk about the usual decrease in creatinine and blood pressure and rise in GFR that happens normally during pregnancy. However he said that given the damage in my kidneys, I may not have that typical change. I don't recall having a decline in creatinine with my pregnancy, but then again I was sick pretty early on.

So - now we are in TTC mode! I admit that I am reeeaaaally scared. Mainly about losing another child, but I have some fears floating around in the back of my mind about making my kidneys worse. But if there is even a slim chance of having a baby to bring home I have to take the chance. I think I would look back and regret it later if I was given the green light and didn't try at all.

Keep me posted on your results and your nephrologist's thoughts. I will let you know about my tests once they come back.
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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Re: I'm finally back

Postby kvirl » Sun Apr 03, 2011 11:37 am

by kvirl (13 Posts), Sun Apr 03, 2011 11:37 am

Hi Sarah & Trish:

I just had my visit with my perinatologist this past Friday. I asked her the difference b/t a perinatologist and an MFM and she said they were essentially the same. I started worrying when I kept seeing everyone use that MFM acronym.

Anyhow, she said that she's been following my progress as my Nephro sends her updates. She is happy with where my kidneys (39%), creatine (1.49) and proteinurea (0) are at. She says that she is "not cautiously optimistic but optimistic" about a successful pregnancy. I'm surprised b/c the last time I saw her, she was nowhere near that positive and my husband and I were prepared for the worst at this appointment.

Based on where I'm at, she gave me a 30% chance of pre-e recurrence. As to HELLP specifically, she indicated that the percentage would be low, around 1-5% but did not have concrete numbers and would look it up. She indicated that pre-e also affects kidneys, not just HELLP. I didn't know that. So, pre-e, regardless of progressing to HELLP, can be just as bad for your kidneys, liver, etc.! She again confirmed that she's worked with women in our position who went on to having successful pregnancies, including NO pre-e (wouldn't that be wonderful!!). She said that pre-e doesn't have to come back and that since I'm with the same partner, that is a step in the right direction. Also, re placental abruption, the high risk population are those with cocaine or smoking habits so unless I picked those habits up recently, I'm looking good in that direction as well.

With respect to "trying again", she is going to discuss my use of Lorsartan with my Nephro and believes that I can do an "on again/off again" until I conceive, i.e., stop taking for two week while trying to conceive, if period starts, then resume until next month type thing. Apparently the half-life of this medicine is quite short so she is not that worried about it but since it is an ace-inhib, she is cautious about it. In addition, she wants me to start prenatals with DHA and take low dose aspirin (enteric-coated) otherwise known as "baby aspirin". She says that baby aspirin has been shown to reduce the onset of pre-e in some women. However, not all women can keep it down, so, we'll see.

Once pregnant, then it would be visits/ultrasounds every three weeks, weekly at third trimester provided everything is going according to plan. She advised that there would be genetic testing early on to see if any chromosome abnormalities (outside down syndrome) that would warrant the termination of the baby in view of potential kidney/health deterioration. If things start happening in terms of pre-e/HELLP, then provided we are at 24wks, they'll deliver. I told my doctor the only thing I don't think I can ever do again is deliver our baby not alive. That was one of the worst experiences of my life (the other, making arrangements for out little one).

My next nepro appt is in May, so though I hope for additional kidney function/lessening of creatinine, I also now hope that I'm stable and the numbers don't drop.

Anyhow, I am awaiting the go-ahead from my perinatologist re the Lorsartan and should hear from her within a week. Also, my doctor didn't mention all these tests that you two mentioned. I'm going to email her about those.

Finally, my doctor also advised that there is a school in Southern California, the San Diego area, that offers a free resource to California residents regarding drug interactions and clinical trials, etc. I know Sarah is in Chicago, but Trish, if you live in California, that could be something to look into. I'm not sure if I can write the name/phone number on the post but if interested you can email me directly.

Trish, I just re-read your posts, did you know you had kidney issues prior to pregnancy? I thought you did but then from this last post, it looks like you didn't.

Sorry this is so long!

Kristin
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Re: I'm finally back

Postby trish9 » Wed Apr 06, 2011 03:21 pm

by trish9 (74 Posts), Wed Apr 06, 2011 03:21 pm

Hi Kristin,

No, I didn't know about my kidney disease until I had my first prenatal visit and they discovered 4+ on urine dipstick. It was a pretty bad shock. I was pretty angry about at it at first because no one really understands why this particular disease develops and there isn't much in the way of treatment other than BP control and ACE/ARB therapy to reduce proteinuria. I can't change the facts, so I've accepted it and I'm trying to just do what I can to slow progression. My nephro stopped my
ACE and ARB as they can affect proper development of baby's kidneys and facial bones. He also did not want to be in the position of having to scramble to regulate my BPs once I was already pregnant. He preferred to have me stable on "baby safe" agents in advance and get a good baseline protein measurement since we knew that the proteinuria would rise off these meds.

All of my thrombophilia labs came back normal. My creatinine is 1.1 and creatinine clearance is 73. I have significant proteinuria of 1200mg, but we expected that off my ACE and ARB. I will be on Lovenox if I get pregnant. I am still worried about PE again and possibly losing more kidney function, but we are committed to going forward. At least I will be closely monitored this time.
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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Re: I'm finally back

Postby sarahkm » Sun May 01, 2011 04:44 pm

by sarahkm (86 Posts), Sun May 01, 2011 04:44 pm

Hi there,

Well, I've been to all my doctor appointments and had ALL the blood testing done. My creatinine is at 1.8 and my GFR is at 35. In all the phospholipid, coagulation testing, protein testing, the only thing that came back abnormal was the PAI-1 gene mutation. I guess I have the 5G/5G phenotype. I'm in the middle of doing some research to better know what this means. Most of the literature I've found talks about women with the 4G/4G and 4G/5G phenotypes.
Also there was some mutations on the MTHFR test but they were on different loci, so I guess it not significant.
My OB talked with the MFM doc and it will be recommended that I start on LDA before conception and be on Lovenox during at least the first trimester, but probably throughout the pregnancy. I haven't talked with my nephrologist yet about the results. He wanted to see the results before switching me over to labetalol.

I'm trying to better understand why a mutation in this PAI-1 gene would contribute to placental abruption and preeclampsia/HELLP.
My husband and I are still undecided as to whether to go ahead and TTC. I'm leaning toward going ahead. The adoption prospects are looking grimmer.

Hope all is well with you!
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

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