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Re: I'm finally back

Post by sarahkm » Fri May 31, 2013 09:23 am

Wow, a lot has changed since I wrote that post about adoption! I am now 7 months pregnant and doing very well. Absolutely no signs of preeclampsia yet. They plan to have me deliver before my due date to make sure things don't go haywire again. My kidney numbers are very close to normal now due to being pregnant and my blood pressure is controlled with a very low dose of BP meds.
We were still with the same adoption agency when I got pregnant and are now on their "inactive" list. Thankfully they have a new staff and are becoming much busier with birthmothers due to some good marketing efforts. It is an independent agency in the Chicagoland area. We chose them due to knowing people at church who used them and they had a very good reputation at that time (6 years ago). Since being listed the staff at the agency has completely changed twice. We have always wanted at least 2 kids, so we may go back after our son in born in August and look closer at special needs international China adoption.
Costs vary between agencies, but to give you an rough idea...I think we would have ended up putting out around $25,000 in the end.
I don't know if you've been to any seminars or information sessions about domestic adoption, but completely educating yourself about it is a must. Research each agency and go to several information sessions. It was a rigorous process for us to be accepted and then there is all the paperwork before being put on the list of potential adoptive parents. The agency had us take personality tests, go through 2 or more interviews, etc., etc.
I hope that helps! I would also consider getting a second opinion about whether or not to get pregnant again! I wish we started TTC again more than 2 years ago! Have you talked with a Maternal Fetal Medicine Specialist? Many who had HELLP and went on to have successful pregnancies are on these forums.
Sarah

Re: I'm finally back

Post by laceyrn » Fri May 31, 2013 01:32 am

Can I ask how you chose which adoption agency to go with and how much it cost? Is it a state or national agency? I had HELLP with my first child and was told not to have anymore. I would like domestic adoption also because I would really like an infant, but I'm scared about the mother changing their mind and the cost.

Re: I'm finally back

Post by trish9 » Tue May 10, 2011 08:53 am

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?

Re: I'm finally back

Post by sarahkm » Thu May 05, 2011 07:47 am

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

Re: I'm finally back

Post by trish9 » Wed May 04, 2011 10:15 am

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

Re: I'm finally back

Post by sarahkm » Sun May 01, 2011 04:44 am

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

Re: I'm finally back

Post by trish9 » Wed Apr 06, 2011 03:21 am

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.

Re: I'm finally back

Post by kvirl » 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

Re: I'm finally back

Post by trish9 » 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.

Re: I'm finally back

Post by sarahkm » Thu Mar 31, 2011 03:05 am

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

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