Pregbancy with FSGS

• By LowriHanlon
• Posted October 27, 2009 at 6:28 am
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Hi
If you put pregnancy and FSGS up on search for this site you will get a really good discussion page where a lot of people talk about this issue. I am in the same situation as you. But I am 37 with no children as yet and was keen to start a family this year until I was diagnosed with FSGS. Seems that some Nephs are against pregnancy altogether and some say the same as yours. However, you will find that some women on that page had their children when they had FSGS and were fine. I'll be interested to see any more replies for your note.
Thanks

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• By JaiJai
• Posted October 27, 2009 at 8:48 am
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I am 26 yrs old and was recently diagnosed with FSGS. I spoke to my neph about having children and he did not give me a yes or no answer. He did advise me of all the complications people with kidney disease can have during pregnancy. He said to keep that in mind. I could tell he was leaning towards "no", but wanted to inform me of the risks and not just tell me yes you can or you cannot have children. I have read that people who have a creatinine level of 1.5 or less are less at risk for pregnancy complications. My creatinine is 1.87 and I've decided not to have children because of these dangerous risks.

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• By dschick81
• Posted October 27, 2009 at 2:30 pm
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I had my son with FSGS, was induced at 36 weeks b/c i developed preeclampsia...was considered fairly high risk....they told me not to have any more kids...I had my daughter in 2007, she was not planned, at that time i was in remission, they still considered my pregnancy high risk, but other than slight vit d and iron deficiency, the pregnancy was fine, and she was born at 38 weeks and both my kids were born perfectly. listen to your doctor, but for me, non of my kids were planned but God worked it all out...fsgs and all....

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• By bryn13
• Posted October 28, 2009 at 2:05 pm
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HI
My husband and I are just in the pregnancy planning stages. I have had FSGS for three years. My creatinine is at 0.65 (so in the normal range) but I continue to spill about 2g of protein per day. My function has been stable for all of this time and I have no odema. I spoke to my nephrologist about becoming pregnant and he was happy to consider this as long as my blood pressure was stable at 120/80 or less and the protein spilling didn't go out of control when the ACE and ARBs were discontinued. I have also been referred to the high risk obsetrics team and they were happy for me to go ahead with a pregnancy. Although they were unable to tell me exactly what would happen they did give us some statistics of what we might expect. Given my renal function is almost normal and my BP is very well controlled they said that I have about a 30% chance of developing pre-eclampsia.... so on their advice we are chosing to view this as a 70% chance of not developing pre-eclampsia. I was also advised of extra monitoring that would be required.... so all things considered we have been given a reasonably positive outlook.

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• By vanessakb
• Posted November 6, 2009 at 11:22 pm
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I'm so glad I checked in on this site, I try to stay away, because it makes me a little jumpy.

I have been told, by my neph, whom I love, that I have FSGS. Found out a little over two yrs ago, after going to bad neph, I switched to my new one about a year later.

I told him of my plans and hopes to get pregnant. He took me off all my meds, partly b/c they weren't doing anything for me and to start getting all the nasty stuff out of my system. I was taking cellcept, lisinopril, lasix, potas., etc.

My neph wanted me to see a Perinatologist (High risk OB) while I was pregnant. I got pregnant on the first try (last Sept.)!! I had an excellent team working with me. I saw my perinat (high risk ob), my reg ob, and my neph.

I had NO blood pressure issues! No preeclampsia! LOWERED protein spillage! As far as my kidneys went, they weren't a problem! I gained 35 lbs and lost about 25 with in a week, probably due to water retention. My ob scheduled my c-section for 39 weeks and I have the MOST WONDERFUL baby boy.

I ate what I wanted, but didn't go crazy. The only thing my neph told me to stay away from was Chinese food!! I saw my neph 8 weeks postpartum and everything looked good! Best of luck, let me know if you have more questions!!

Vanessa

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• By bryn13
• Posted November 11, 2009 at 6:55 am
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HI Vanessa
Out of interest what was your creatine and protein levels before you got pregnant? Had you had trouble with blood pressure control before??

Thanks

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• By vanessakb
• Posted November 13, 2009 at 10:27 pm
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My protein levels went between 2-3 grams, it was never very predictable. My creatine levels were normal and stayed normal. My blood pressure was only high because of the steriods/cellcept I was taking. Prior to, I had lower blood pressure.

I hope you're able to get pregnant and have a successful pregnancy! Let me know if you have questions.

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• By daisy331
• Posted November 18, 2009 at 10:42 pm
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I was 8 weeks pregnant when my Dr discovered I was spilling protein. I was monitored very closely by a team of doctors through the whole pregnancy and besides some severe swelling, everything went great. After my daughter was born and my protein was still over 5 grams, my biopsy confirmed FSGS.

After a few years of Prednisone followed by Cyclosproine (that didn't do much of anything for me), my Dr was willing to take me off of my medication so we could try again. The second pregnancy was a little bumpier with high blood pressure and massive swelling, but at 37 weeks I had a healthy baby boy.

It is definitely possible, but listen to your doctors. I was on bed rest with both babies for several weeks before being induced...everyone is different in how their bodies will react.

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