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!