I started a group on Facebook some time ago for women with FSGS that either are or want to be pregnant. I started it because I wanted to hear other women's stories about being pregnant with this disease, because when I had Izzy, I had only been diagnosed with MCD. I had a fantastic pregnancy and a healthy little girl.
Sadly for me, my doctor has advised against having another one. I can't get in to remission no matter what drugs we try. I was in pretty deep denial at that time...I was only spilling 5 grams of protein (funny, right...ONLY 5 grams) but I felt that I knew my body and I just "knew" that everything was going to be ok, so I started the group. It was pretty small, but we have 25 WONDERFUL women in the group now. We've had great discussions...great advice...it's been a wonderful way to get to know these ladies, as we all share this disease.
But sadly, we had some bad news this past week. One of our members was 25 weeks pregnant with her baby, and had to deliver due to some complications. Even though the baby fought hard, it was just too early, and passed late last week. This is the 3rd loss for this woman and her husband, and I'm finding it hard to think of ways to comfort her.
I have no idea what to say. I can't imagine. I know the pain I feel thinking that I can't have anymore, and it's heavy, but what she's feeling???? I have no idea.
And it makes me so mad. She'll never know what happened or why, and she'll always be wondering. She got to hear him cry...she said it sounded so sweet. It's just crushing. I've never met her..none of us have, but she couldn't find a better support group than the 24 of us that are waiting to hold her up if she needs it. This disease takes so much away, but I hope, for her, that it's given her another place to find support. Sadly, many of the women in the group have lost children, so there's experience.
I guess that's the thing I'm glad about with this disease. I've said it before, but I've met great people along the journey this time around. We share something that only we understand, and we're all there to help pick each other up when one of us is down. I love my kidney peeps.
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Transplant / Living Donor Info for me (edited)
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I have no wisdom to add, just wanted to pass on my thoughts and prayers. That's awfully hard.
ReplyDeleteDo you still run this group? I just sent you a message on FB asking if it is still active because I am looking for resources and support.
ReplyDeleteMy beautiful daughter has fsgs.The pain is great,but I know she will be well one day.Also I firmly belive that that dear mother will hold all three of those precious babies again,and will raise them.I firmly belive that there is a creator and he loves us dearly,and cannot wait to do as he promised "Ear has not heard, nor eye has seen what God will do for those who love Him"We have to hang in there,and support each other. My mother had this saying "we all have the ability to tear someone down,or build someone up, If we choose to tear someone down we tear ourselves down,but if we build someone up we build ourselves up".
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