Can't have children...

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misscali
Regular Member


Date Joined Feb 2007
Total Posts : 154
   Posted 5/14/2011 4:18 AM (GMT -6)   
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

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 12066
   Posted 5/14/2011 9:22 AM (GMT -6)   
I'm 43 yrs old and have never been married or had kids. I just found out that I have a positive ANA (maybe lupus). I found a website in my search about this disease that pregnancy and lupus is a dangerous mix. I'd listen to the doctor if I was you.

Do I miss not having children?
Somedays, but I'm a first grade teacher and I get to work with kids daily. This fulfills my "children cravings" mostly. When I just have to hold and cuddle a baby I go see a friend with a baby. I have several nieces and nephews who I spoil rotten on a daily bases. They all call me "second mama".
Maybe you can fill that hollow feeling with nieces, nephews, friends' kids, or even plan to adopt?
Joy

pluslouie
Regular Member


Date Joined Feb 2010
Total Posts : 55
   Posted 5/15/2011 2:20 AM (GMT -6)   
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.

pluslouie
Regular Member


Date Joined Feb 2010
Total Posts : 55
   Posted 5/15/2011 3:46 PM (GMT -6)   
Sara's blog is despitelupus.blogspot.com

He talks a lot about deciding to get pregnant and all that entailed and whatnot, plus how she cares for two little ones while taking care of herself. I love her thoughts on things! But at the same time, she lives a way most of us can't... she and her husband hired a full-time au pair to help care of the children. Her blog may be one you want to look into though!

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 5/16/2011 9:06 AM (GMT -6)   
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

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis, Degenerative Osteoarthritis, Asthma
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. (20-40mg prn), Vit. B12 2400 mcgs, Vit D 1000U and Ambien every night. Advair, Albuterol and DuoNeb inhalers.

mandeloo
New Member


Date Joined May 2011
Total Posts : 14
   Posted 5/16/2011 6:50 PM (GMT -6)   
Hi there-

I have three children at age 29. Although I may not even have lupus specifically (most likely mixed connective tissue disease) I get many of it's symptoms. I will tell you right now that if I had known I was going to be sick I would have never embarked on the mother journey. I love my children with all of my heart and I'm not saying I wish I didn't have them but I'm no longer the mother I was (or ever in one of my children's case.) I don't wish this feeling on anyone. When my oldest son was given the task of writing four things that described his mother on my Mother's Day card he wrote "tired, aggravated, caring and sick". It crushed me. He didn't mean any harm, he's only 8 but it was the truth. This gig is near impossible when you're suffering like we do.
I don't know if this tale softened the blow because a woman's instinct to have children is strong but I hope it helped with the perspective of it all.

It is also possible that I survived a pregnancy and birth with my problem (if I did it was my last child) and he was healthy throughout. However, he spontaneously came a month early and suffered a minor heart defect. It resolved itself.

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5511
   Posted 5/16/2011 10:04 PM (GMT -6)   
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
Moderator of Lupus and Fibromyalgia forums

37 years old, diagnosed in 2000. SLE, Fibromyalgia, APS, Sjogrens, Raynauds, Thrombocytopenia, Vasculitis, Stroke – 2002, Bilateral sacroilitis, Clinical Depression/PTSD/Anxiety/panic disorder, Optic Neuritis. Prednisone, Plaquenil, Coumadin, Cozaar, Zoloft, Didrocal, Seroquel

twinz
New Member


Date Joined May 2011
Total Posts : 3
   Posted 5/17/2011 11:27 PM (GMT -6)   
Six miscariages due to lupus but I was determined to be a Mom since I have always loved kids .Children were carried bu a gestational surrogate (my eggs DH sperm) Costly but can be done for a lot less than the celebrities doing it.I do sometimes feel guilt though because I have gotten worse and no longer with DH so it can be really hard sometimes.I feel kids get shortchanged by my illness bu tthen again I probably spoil them more because of that guilt.
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