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Hi everyone. I found this forum through a google search and have been trying desperately to find someone with the same condition I have or someone with a similar and/or advice. I hope someone here will.
I am 30 years old and have FCHL (familial combined hyperlidipemia) which is an inherited disease resulting in extremely high LDL cholesterol and triglycerides that cannot be managed with diet, exercise and medication. I have been on cholesterol lowering medication since I was 7 years old, my mom had her first heart attack before she was 30.
My husband and I have been wanting to have a child and were referred to a cardiologist that specializes in lipid disorders. To make a long story short, he felt that it was extremely risky and point blank asked me if I had a 'salmon instinct' as that is what I would be effectively be doing. The main fear is that without my medications that my lipid levels will spike so high that I will develop pancreatitis, which has a 20-30% mortality rate. The cardiologist thinks this will be a high possibility, especially because on top of the FCHL, pregancy will exacerbate lipid levels. While there were other risks, (like preeclampsia, gestational diabetes that might not revert, etc.) He was more concerned with the pancreatitis and my increased risk of heart attack.
His only suggestion, was that I might be able to receive plasmapheresis (he called it both plasmapheresis and lipid apheresis) twice a week to treat the lipids in my blood while I am pregnant but he wasn't sure that it had ever been done before or if they would be willing to treat me that way in case it might have an effect on the baby. Has anyone ever heard of plasmapheresis treatment on a pregnant woman?
I realise there is no guarantee in this life for anyone but when I think of going through this life, without being able to carry a child that is part my husband's and part mine makes my heart ache. I always envisioned this little blond haired, smiling boy that looked just like him. I want to have a child, I want to have my husband's child, but I don't want to have a baby only to have to leave him/her behind to be raised by a widowed father. How do I know what to do? I can't seem to find any information on women with FCHL and pregnancy. I am feeling so frustrated and alone.
Wow! I'm sorry I don't have any information for you, I just wanted to welcome you to the High Risk board. It sounds like there are a lot of considerations to look into, and I hope you are able to find the information that you need. Good luck!!