newleaseonlife1

newleaseonlife1 t1_jbzwfo5 wrote

My friend Katie died of her chek2 mutation at age 32. It was long and horrible and she told me that if she could go back, she'd get the surgeries. It's not as famous as BRCA but it has a range of health effects. No woman on that side of my family has lived past 50

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newleaseonlife1 t1_jbzq9u2 wrote

So have you!!

That makes total sense. The length of the surgery is hard on anyone, and you shouldn't go through a recovery like that if you ultimately don't care as much.

I very very much get that "Idgaf I just wanna be done with it" feeling. Shit has been so rough I wanna keep my plastic surgeon as my emergency contact 🤣🤣. I don't even wanna have a gallbladder removed without him in the room

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newleaseonlife1 t1_jbzpver wrote

My blood disorder is unknown. I've had high factor VIII and protein S, high RBC and high hemoglobin. My cbc and coagulation workup is literally different every time. Until they have a better idea, my treatment plan is lovonax after surgery.

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newleaseonlife1 t1_jbzm2du wrote

I had the mastectomy and clotted twice in surgery, which led to a huge necrotic wound that took 3 months to heal. That led to a blood disorder diagnosis. In revision surgery, I got a staph infection, my incision ruptured, and I needed IV antibiotics. The CT scan found an enlarged heart. And this is all WITHOUT cancer. Yet. Oophorectomy was ok, but I struggled for a bit when I had to get off the estrogen due to the blood disorder.

Have you considered a DIEP reconstruction? Even with all the problems I have, my boobs/figure look pretty great, I feel somewhat like myself again (loss of sensation is hard) even though I lost a nipple due to necrosis. It'll get reconstructed. I'm really happy with how realistic everything looks and feels. It was a really rough recovery the first 2 weeks and I just had to move really really slow, but I was back to myself 6-8 weeks later aside from strenuous exercise

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newleaseonlife1 t1_jbzk6o6 wrote

I'm BRCA2 and CHEK2 as well. It means you are never done in my mind. I've had an oophorectomy and mastectomy, but I need colonoscopies every 3 years, skin scans every year, etc.

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newleaseonlife1 t1_jbzjoz0 wrote

I've only had breast reconstruction with no cancer and I feel like I've been put through the ringer with no end in sight to the surgeries and procedures and complications. I don't think I could have gotten through it had it been cancer as well. Kudos to you for fighting this hard.

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