I read your post several weeks ago and have been thinking about you ever since. Sorry it has taken me so long to respond! You have been through so much. I can relate to a lot of your story, and even though my DIC/emergency hysterectomy happened four years ago, reading your story gives me chills. I still haven't worked through everything that happened to me, and am hoping to see a trauma therapist soon.
I also lost a baby boy to stillbirth at 35 weeks. His death has been the most difficult grief to carry. However, I have found support in dealing with his death and grief.
My postpartum hemorrhage and emergency hysterectomy has been a different story as far as support and awareness. Hardly anyone (besides my husband and the people in this group) realizes the implications of what happened in those hours I was bleeding to death and the devastating after effects. I have looked for resources at multiple hospitals. I called the OBGYN who performed my hysterectomy several weeks after the surgery because I needed help, and she asked if I had started my period yet!!! After she just cut out my uterus and reproductive system!! That didn't give me a lot of confidence. I went to a large hospital in Denver looking for resources...the doctor acted is if she had no idea why I was there. It really feels like if you are unable to get pregnant, there is no place for you in an OBGYN office.
After years, I finally realized that if anyone is going to help me heal, it has to be me. I recently started to feel strong enough emotionally and mentally to seek help. Don't let doctors or medical assistants make you feel crazy. You know what you are going through and what the reality is. They are the ignorant ones if they are not taking your health seriously. All that to say, help will probably not come to you. You have to seek it, be persistent, keep going to doctors until you find one who will try things to help. I have been so frustrated and hurt by medical professionals who have not taken my emergency hysterectomy and the after effects seriously. The only way to bring about change though is if we speak out, advocate for ourselves, and raise awareness. Do you have support now? I know you said you are seeing a therapist--do you have friends and family helping out?
On another note, though I personally did not have kidney failure or stay in the ICU due to my PPH and DIC, my son went into multi-organ failure as a six-month-old and was in the PICU five weeks...he had multiple surgeries, his kidneys shutdown completely for weeks, and he had a blood clot which permanently damaged his left leg.
I am happy to talk about anything if you would like. I can give you my email address if you would like to talk more. Sending you lots of strength!
I would love to chat more. With school starting things have been busy here and I haven't been able to write any replies to my post yet.....