Hi Sarah,

Thanks for sharing your experiences about adoption. I'm sorry that it sounds like it has been a long and frustrating time. We are still hopeful that we might be able to have a baby on our own, but I am trying to be realistic as well. I'm going to broach the subject of IVF meds, as a route to possible surrogacy, with my nephrologist and see what he thinks. We hadn't discussed it before since fertility had not been one of our (many!) issues.
Good luck with finding out more about the 5G/5G mutation and hope that they have some answers for you. I don't think anyone wants an underlying condition, but if it turns out that you have one that can be managed with meds maybe that will be more encouraging to try again?

Trish,

I have seen my nephrologist. Basically all my doctors say they will be ready if we decide to go ahead and TTC. They are not necessarily giving me the green light but they are not completely against it. I think they realize that we have been waiting to adopt for 3 years and are understanding that we may be willing to take the risk. They obviously know that it is my decision and they are just making sure I know their concerns.
I need to talk to my nephrologist and MFM more about the test results to better understand what it means to be 5G/5G.
My husband is not thrilled that I would need to give myself injections for most of the pregnancy. Somehow I'll manage. I'm a veterinarian who uses needles daily on dogs and cats, but I'm not too great with them when they are being used on me.

Adoption....where to start...
We are on a waiting list for domestic open adoption. Right now we are #2 on the list (we've been on the list for over 2 years) which unfortunately doesn't mean much. At the time when we were put on the list the average wait time for a match was 8 months and no longer than 18 months. A match means that a birthmother selects us to be the adoptive parents, but she is allowed to change her mind anytime including after the birth. Our profile has been showed many times but so far the birthmothers haven't picked us. We just don't seem to have that "thing" that they want. More of the issue recently, is that they are working with many more African American mothers and we have decided that we are not comfortable adopting an African American baby. So, if you are open to adopting biracial or african american newborns, you will have a faster placement. We stayed with domestic adoption because we prefer to adopt an infant. That may have to change...
International adoption seems to have become more difficult also. Some countries have closed their doors to adoption. It has gone from 2 years wait to adopt a child from China to about a 4 to 5 year wait.
We briefly considered surrogacy but it would end up being much more expensive since you can go through several IVF cycles before it takes. At that time the doctor was concerned that my kidneys would be affected by the drugs needed to donate eggs.

Hope that helps! Sarah

Hi Sarah,
I'm glad that you got all of your testing back, and your kidney function is stable which is great. Sounds like we would both have Lovenox in our futures! When do you see your nephrologist? Hopefully you get the green light from that standpoint. It is a tough decision to make. I still have some anxiety, but the need to TTC again is stronger than my fears. Hopefully you and your husband can come to a decision that you are both comfortable with.
I do want to ask you about the adoption process. It's something that I have thought about, although my husband has not really wanted to consider it up to this point. Were you and your husband looking at domestic and/or international adoption? What is looking grimmer about it? Is the waiting list getting longer? I know very little about adoption and wonder, where do I even begin to learn about it? I'm hopeful that I can get pregnant and bring our baby home this time, but if that doesn't happen I guess I need to learn about our other options as we really really want to be parents. We have looked a little at gestational carriers, but I don't know how I really feel about that process. Is that something that you have considered?

Trish

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

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.

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

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.

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

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.

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