Rogene

February 20, 2008

I was just reading about your battle with blood clots with the

possibility of PE. I don't think I read everything you said about

it, but I did see you mention that you can feel a blood clot coming

on. I just wanted to share my experience with PE. At first, I

wasn't going to, but then I read the post about how you feel about

death. So, I don't think this will scare you, just give you another

perspective. Four years ago my mom wasn't feeling well. She had

blood work done and they discovered she had an internal bleed and

needed immediate blood transfusions. I can't remember the exact

amount she received, but it was a lot. She got out of the hospital

a few days later and felt much better. She went back to work as a

nurse and all was fine. Apparently, after receiving transfusions

you are suppossed to go on blood thinners, but they never figured

out where her internal bleed was, so they couldn't. About a month

later, we both were going to the Dr.'s together. She was getting a

brief checkup and I was needing more vicodin for my pain that no one

knew why I was having. I was taking my 2 yr old twins so she could

sit with them while it was my turn. I was at home getting the twins

packed up so I could go pick her up. The phone rang and I could

here my grandma was on the line, but I could barely here her because

my mom's dogs were growling and barking in the back round. I was

able to make out that my mom had passed out. I told my grandma to

call 911 and I would be right there. I buckled up my half dressed

twins and rushed over there. My mom lived 2 blocks over. We were

extremely close and best friends. When I got there, the paramedics

were somehow already there. My mom was on the floor in the kitchen

and was alert and seemed fine except she was sweating profusely.

She said she wasn't experiencing any pain and felt ok. I was sooo

relieved. I had always had a huge fear of losing her, to the point

that I had nightmares. I got a weyt washcloth and wiped her face

off. Then I went in the other room to make some calls to find a

sitter so I could meet her at the hospital. My twins LOVED their

grandma and were hanging out with her. Then I started hearing

screaming and the paramedics yelling at me to get my babies out of

the room. I ran back into the room and my mom was seizing

violently. I was so torn because I wanted to protect my children

from seeing what was happening, but I didn't want to leave my mom's

side. I actually can't remember what I did. I just remember all of

a sudden being

alone in the house with my twins and my terrified grandmother after

they took her in the ambulance. I knew she was dead, but I went

into a weird denial and trance. I was really good at panicing, but

I knew I couldn't because of my little children and my very fragil

grandmother. I was so calm it was spooky. I was even making jokes

to get my grandma to relax. I called my husband and told him he

needed to come

home and take me down to the hospital. Then I calmly took my

grandma's blood pressure, which was thru the roof, and then gave her

her meds. I then packed up all her meds and loaded her and the

twins up and took them back to my house. My girlfriend came and

stayed with them while my husband took me to the hospital. While we

were on our way, I told him she was going to be fine even though I

knew she was dead. I just could not process it, so I pretended she

wasn't. She was at the same hospital that she was a charge nurse

at. I had already

called her co-workers and asked them to sit with her until I could

get there. I was still in such denial. When we got to the ER I

asked to see my mom. They took us back in the ER, but instead of

going into a room I noticed I was being lead into an office. I

thought, ok, she's in surgery and they are going to explain it to

me. I noticed a bunch of nurses coming up behind me and one in

particular with a wheelchair headed right for me and as I wondered

what the wheelchair was for I heard my mom's boss say, " Jill, we

lost your mom. She didn't make it. " The wheelchair was for me. I

heard someone screaming and I realized it was me. It was the most

devastating day of my life. I completely shut down and wound up in

the psychward a couple days later. The only reason I hung on was

because of my twins. The day my mom died is the day I went from

having some challanging but manageable heath issues to having full-

blown, debilitating fibromyalgia. It was like a bomb of disease

went off in me. My mom died of a PE. No past history, no

symptoms. I don't fear death either, but I do fear what it will do

to my children. I know we all have to let go of our parents at

sometime. It must be horrible to have so many side effects from a

med that is so crucial for you to be on. I can completely

understand you questioning if it is worth it. If you do decide it

is not worh it and go off of it, I strongly encourage you to have a

heart-to-heart with your husband and kids. Make sure they

understand why you can't do it anymore and let them know you will be

ok one way or another and that you would rather live a better

quality of life for perhaps a shorter amount of time, then to have a

poor quality of life for a longer amount of time. I think this will

help them tremendously if something should happen. But, I agree

with

what was said before. You are still here because you are a

wonderful role-model and have so much to share and give to others.

I hope I didn't overstep any boundaries or say anything to hurt

you. Like I said, I wanted to share my story to give you another

perspective to consider. Best Wishes, JIll

February 20, 2008