Pregnancy and FSGS

allisonejw84
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I am 23 years old and do not have any kids. I desperately want them. I have read online that once your kidneys start to fail, you cannot have kids without serious complications. I know everything I have read tells you that you have no way of knowing when your kidneys are going to fail. I have had FSGS for about a year now. I am new to this and am not sure what to expect as life goes on. If anyone has had kids while they had FSGS, I would like to hear about their experience. Also, I was wondering how long did you have full kidney function after being diagnosed with FSGS? I am scared to death that my kidneys are going to start to fail before I get the chance to have kids. :(

14 replies

klang321
  • By klang321
  • Posted January 18, 2008 at 2:27 pm

Just wanted to let you know, that I am 26 years old, and recently diagnosed with fsgs. The reason that I found out I had the disease was because of the protein testing they did while I was pregnant. After the birth of my son, I had the biopsy to confirm the disease.
My pregnancy experience was somewhat complicated by the disease. I retained a lot of fluid, was on partial bed rest, and the loss of protein continued to go up through the whole pregnancy. The one good thing,(besides my son), is that I did not lose any kidney function.
My son is 8 months old, and my kidney function is normal, my protein levels have dropped, and the doctors are saying that I have reached partial remission.
I don't know your specific case, but I think that you should definelty discuss this with your doctor, and have them keep a close eye on you throughout your pregnancy.
Good Luck!

princessjacobson

I didn't realize I had FSGS until I got pregnant. I have a tremendous amount of swelling. I had a hard pregnancy but my baby was absolutely fine. The doctors had a tough time during my pregnancy because I didn't know and they didn't know that I had FSGS. The pregnancy brought it out and at a rapid speed. Mostly, I was okay during the pregnancy. I had a alot of edema ( 60 pounds by the time they took her a month early) but it went down after my Csection. A year later I had a biopsy and we found out I had FSGS. The swelling wasn't fun (I couldn't bend my arms or legs and I would wake up and couldn't see until it drained down) but it was worth it to have my baby. I would do it again in a heartbeat.

I would talk to your neph. and see what they say. You might want to do it sooner than later.
Best of luck

popsycle
  • By popsycle
  • Posted January 22, 2008 at 1:33 pm

Hi, I was also diagnosed with FSGS when I was pregnant. I had an easy pregnancy with no complications at all. I have had FSGS for about 2 years. I saw the kidney specialist and he did a biopsy when my little boy was about 6 months and confirmed the FSGS. I have only been on blood pressure pills and everything was fine, but now it has gotten worse and I'm on twice as much bp pills and cholesteral pills. I go back in two months and if it's not better I go on cyclosporin or prednisone. I've been told that you can't get pregnant when your on prednisone of course but once your done it's ok. Cyclosporin I do believe is the one that can cause infertility but theres cellecept (spelled something like that?) that isn't quite so bad. I was told by my obgyn that I definatly couldn't get pregnant again until it's under control. My Nephroligist said many people with FSGS have more children, it just depends on how serious their FSGS is.
I hope this helped some. Have faith, everyone's FSGS is not the same. We read about alot of people with bad FSGS but there seems to be many who are in remission for years. Good luck to everyone!

allisonejw84

I have talked to my nephrologist and they said it would be okay to have children as long as my kidneys are functioning. I am finishing up my degree and would like to get married first before I have kids. I am not going to wait very much longer (3 years max). The OB and the Nephrologist told me they would have to watch me and just monitor things. I have been unable to stay in remission without being on the steroids. The neph did tell me that I could be on the steroids while pregnant, so that is at least encouraging even thought I hate the steroids. My boyfriend thinks it's a ploy to speed things up! He knows we are on a time crunch! Thanks everyone. This really helped. :)

Jenny1
  • By Jenny1
  • Posted January 31, 2008 at 6:59 pm

I have to say that I like your neph better then mine. I'm 31 and ready to have kids. I have had FSGS since 1986. My neph hunted some sort of study down that said of the women who participated, 50% lost their baby and 50% had irreversible kidney damage and were on dialysis within 3 years. That scared me when she told me about that a year or so ago. And she highly recommended that I didn't take the risk. What I would like to know is what kind of percentage did these women have? Has anyone heard of this study? My doc said it was done in the late 80's and it was only done on a minimal number of women. Also, has the medical industry changed enough to lesson these risks? And has anyone actually had children knowin the already have FSGS? It seems like a lot of people were diagnosed because of the pregnancy...Any help would be definitely appreciated.

allisonejw84

Jenny,
I would almost say to get a new nephrologist. My doctor told me it would be okay to have kids, and so did my OBGYN. If he is going off of a study from the 1980's, that would bother me, let's get up to date with things. Just my opinion. I was told that I would be monitored and that it may be a complicated pregnancy, but nothing too complicated that they couldn't handle. The only other thing that the doctor did say it to tell them when you are going to try because they would need to switch my meds around. They never said anything about passing it on to children or anything like that. Have you talked to your OB about it? That may be a better route, if you like your nephrologist. I am not going to try for kids for a few years, but when they changed my diagnosis from minimal change to FSGS, that was one of the first things I asked about. I absolutely LOVE kids and would be devastated if I couldn't have any of my own. Sounds like we are kind of in the same boat. I would also say to do your own internet research, even though doctors don't like to hear that you found something on the internet, but it can be useful. Hope this helps you.

Allison

coley1975
  • By coley1975
  • Posted February 12, 2008 at 9:09 am

Hi Jenny
I had FSGS for 14 years now and my neph tells me that I have a mild form of the illness. I have a son who is now four years old and is the ultimate joy in my life. I actually was over due when I had him. Honestly I was the healthiest I have ever been when I was pregnant. I was able to stop taking my blood pressure meds and asthma meds while I was pregnant. However my pregnancy was not easy at all. I was sick for the first 5 months. I was was always tired much more than usual. I delivered a 10pound 6ounce healthy baby boy. I am still terrified that he may get this silent killer but I am hopeful. So we will see. You just have to keep the faith and don't let anything get in the way of your dreams for children. Good Luck.

Tessa
  • By Tessa
  • Posted March 17, 2008 at 9:53 pm

I found out that I have kidney disease during my pregnancy also. It really elevated my blood pressure. Uncontrollable towards the ending. There are so few BP drugs that you can take while pregnant. It also caused me to spill more protein, become anemic, and retain fluid. My son turned out perfect despite all of my complications. They have told me that I should not have any more children because of all the difficulties with him. I would suggest the sooner the better and if you really want to take the chance. I would have another if I could.

Gem1979
  • By Gem1979
  • Posted April 17, 2008 at 5:12 pm

Wow, I can't believe there are so many of you in a similar boat to me. Someone asked if there was anyone who had been diagnosed with FSGS prior to pregnancy. Well I was diagnosed at age 20 and now I'm 28 and have an 11 month old baby boy. I was never told not to become pregnant, however I was counseled beforehand with regards to changing my medication and to warn me of the possible complications. I sailed through the first two trimesters with no major problems apart from a slight increase in protein leakage, however by 34 weeks I was leaking 8 pluses so had to inject myself twice daily with Tinzaparin which wasn't that bad really. My son was delivered by C-section at 36 weeks after my induced labour failed to progress. My kidneys are gradually getting back to normal but there's still time for things to improve. I'm doubtful I'll be able to safely have a 2nd baby but who knows. Has anyone had a 2nd baby with FSGS? I'd love to hear from you. Oh yes and my son was absolutely fine, albeit only 5ib 5oz with being early. All the best everyone!

onebetter
  • By onebetter
  • Posted May 5, 2008 at 10:08 pm

I found out I had FSGS after giving birth to my second child. I had my first child in 1995 but I do not know if I had FSGS then. I was spilling protein and had pre-eclampsia with my first child, which led to a C-section. I had my second son in Nov 2006, and had protein in my urine (2.1) the entire time. I was extremely sick the entire pregnancy, tired, swollen, and in pain. At the time my son was born, I couldn't believe he was only 6 lbs 12 ozs, because I ballooned up to 225 lbs. 6 months after having the baby, I began taking tests. Then I was sidetracked with gallbladder surgery (they found out I had a huge sack of gallstones while trying to find out what was going on with my protein spillage). I didn't have HBP, cholesterol or any other symptoms. After 2 biopsies, I was diagnosed with FSGS. I thank God for my son, without that pregnancy I would have continued untreated until I was sick. Currently I only take Lisinopril to help regulate my blood pressure. My GFR is 77 and I keep my sodium intake down and have decreased my protein intake. By the way, I've seen studies that say reducing protein intake doesn't necessarily help people with idiopathic FSGS like it does with other types of kidney disease. Anyone else know anything about that?

Gem1979
  • By Gem1979
  • Posted May 28, 2008 at 9:53 am

Actually yes, my specialiast told me not to worry about protein intake as it is unlikely it would make much difference if any to the progress of my condition, however he reckons reckons it may be worth me cutting down on potassium rich foods such as bananas, mushrooms, chocolate and tomatoes. I hope this helps.

reginapatricio

My first child was hell. I was sick through the entire pregency, but was told nothing was wrong. By my 3rd trimester I was swollen really bad, tired, protien in the urine climbing really fast. Of course my ob/gyn deliverey by c-section. My ob/gyn stated that it was my gallbladder stupid me said you're right, but first we are going to send you to neph. sure enough she said I had ckd of what who knows. By the time she was born the next morning my paperwork showed I had about 15% fuction left. Anyway my second child very smooth yeah more protein and higher bp. But at that point she(neph) would not do anything due to lack of funds. Finally I found out I had FSGS plenty of bloodwork, 24-hr.urines, ultrasounds, MRIs,and one biopsy. Anyways good luck.

onebetter
  • By onebetter
  • Posted June 1, 2008 at 12:33 am

I went to my neph this week and my protein spillage is down to 725 from 1250 in November. I have greatly reduced my sodium and protein intake by cooking most of my own food. The neph did say that since FSGS attacks at the cellular level, there is nothing we can do to stop it from progressing, but we can reduce the wear and tear on our kidneys by not overworking them with protein and sodium.

KAREN-AZ
  • By KAREN-AZ
  • Posted June 1, 2008 at 2:52 am

I also found out I had FSGS until my 2nd baby was born. My children were back to back 15 months apart. During my first pregnancy, the obgyn though I had toxemia, so I delivered 2 1/2months early (july 2004) . I had a perfectly healthy baby 6lbs 8oz. Then I had a biopsy done in January 2005, before I got my results I found out I was pregnant again. So I had not been placed on any meds yet. This time I had complications again, all the signs of toxemia,only this time the obgyn knew I had FSGS, so he didnt deliver early & I was placed on bed rest as of my 2nd trimester. My second baby was perfectly healthy as well. I tried fertility drugs for 4yrs before I was able to conceive, so I definitely cherish my boys. I am on Diovan & Altace to control my protein levels, but neph hasnt been able to control. my last apptmt he took me off all meds b/c my blood pressure was dangerously low. so I have to monitor my blood pressure & once it increases, I start Diovan again. my kidney function also got worst this last apptmt. i am now at 70%. i am so scared to lose mykidney function, and wonder what life will be like to raise my boys while on dialysis? I pray to God everyday to prolong my disease so that I can enjoy life with my boys since they are only 4 and 2 1/2. Wish everyone the best as well.

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