Can't have children...

Hey Everyone!

After having total kidney failure 6 yrs ago, I feel lucky my kidney functioning returned and are within normal ranges now only with a little bit of protein spillage, the pain from the blood clots in my legs have gotten slightly better with exercise and my overall lupus activity is pretty low right now so I am finally down to 5mgs of Prednisone. However, after seeing my Nephrologist last week, he told me that I probably should/could never have children. I am only 24 years old so it's not really something I am thinking about in the near future, especially because I am still on such toxic medications (cellcept, warfarin, lisinopril), but it still was so discouraging and disappointing to hear. I think it's still sinking in too...like when all my friends are sharing their pregnancy stories, it's something I will never be able to relate to and it makes me a little sad. I know that doctors can often be wrong, but I truly feel that my doctor is very caring and he is also the chief of his department so I really take his opinion to heart....He said it would be a highly risky thing to attempt and it is something he really doesnt think I should do. There are tons of other options for me out there in terms of babies, but just the fact that I could be incapable or in a sense barren, makes me feel less whole, and now there is this emptiness and sadness inside of me knowing this.

Is there anyone else there who's doctors have told them they cannot have children because of lupus? How do you cope with it? And have any of you had children after being diagnosed, was it very difficult? I'd really appreciate if anyone had any thoughts or answers to this and what pregnancy is like for someone with lupus...

Thank you all of your support and take care! xx

Hey Misscali

I feel ya. I'm 23 and was diagnosed with lupus a few years ago. I have never formally been told I can't or shouldn't have children, but I sort of decided I won't. Based on the drugs I'm on, some problems my mom had, and what lupus and pregnancy do when they go together, I don't think it would be wise for me. The amount of stress it puts on your body, plus knowing how active it is in my body, it is wiser for me not to.

It's hard sometimes, thinking I will never be in that special club. But at the same time, I view it as a choice I am making for my good and for the good of my family (potential family.) If I'm pregnant and flaring or on bed rest or whatever, what would that do to my marriage (I'm not married right now, though)? Or, if I have the baby and then flare and am miserable for months, how good of a mom will I be? Plus, there are almost 150 million orphans in the world, so there are lots of kids needing homes!

Also, my mom had 7 miscarriages, but they don't know why. Obviously my risk is much higher. But with lupus, the odds go up a ton! I just can't imagine losing baby after baby.

It helps me to think of it as a choice. So much of coping with anything, but especially chronic illness, is in your head. I also have read blogs and whatnot of lots of women who have had children with lupus. You can read Sara's blog at despitelupus.com (Google despite lupus), and she tells the story of having two children and how and why.

I'm very sorry for that news. But hopefully they'll either get your lupus under control enough for you to have children, or you will find another way to be a mom.

Hi! Everyone,

With improved recognition and diagnosis of autoimmune disease, research and treatment are steadily improving. Healthy babies are born to women in their forties, so when you are twenty, I think there is time to wait and see. I have a daughter who knew when she was 12 that she didn't ever want to have a baby. Now 33, she is looking into adopting an older child as a single parent. After having two healthy daughters, I had a son stillborn from Group B strep. Then, after having  5 miscarriages at 8 wks, I was finally diagnosed with Antiphospholipid Antibody Syndrome. Looking back, I have alot of regrets for what I put my family through. But I am comfortable with knowing that I made the best decisions for myself at the time I was required to make them.

hugs,

suetoo

Hi honey,

 

I was diagnosed when I was 26. At the time I didn't care whether or not I would be able to have kids. I wasn't "there" in life.  After getting married, at 29, my lupus got bad, I had a stroke, antiphospholipid syndrome, etc.  My periods were absolute madness.  I was a mess.  I decided to have a hysterectomy when I was 34.  couldn't take the periods anymore, and I knew, deep down, that kids were out of the questions.  I had enough trouble taking care of myself and my husband.  How was I going to take care of a baby?  Sheesh... It just didn't seem responsible to bring a child into the world with everything going on.... Even adoption wasn't an option for me.  For one, I wouldn't pass the physical!!  A hysterectomy would close the chapter. Give complete closure. I wouldn't have a choice then. My choices were gone....

 

I'm two and half years post hysterectomy and I am SO glad I did it.  But.... I have immense sadness that I won't ever be a mom.  I'm 37 now and it hurts, a lot, when I'm with my friends and their kids.  I do feel left out. I really do. Maybe someday I'll have peace about it all.  Right now I don't.  However, I do have peace knowing that there isn't a child feeling neglected by a mom who is sick and in bed all the time.  I made the right decision even if it does feel awful.  How do I cope?  I cry. Vent.  Pray.  Be the best Aunty my nephew will ever have   My coping mechanisms change frequently. LOL.

 

Every woman's experience with lupus and pregnancy is different.  You have to go with the information you have and follow the advice of your doctors, family and friends.  They will give you information that is BEST for you. 

 

Take good care sweetie,

Ginny