Friday, April 13, 2012

Day Thirteen of Cushing's Awareness: The day I almost died

It was really good to be home and be able to love on my kids.  I had missed them immensely.  I was on a lot of restrictions.  I couldn't bed over, lift anything over 10lbs and I felt that I had to keep myself somewhat reclined or laying back with my head propped up on pillows.  I relied heavily and still do on my family to help watch my children.  It's been hard for me to do this because I was always the one who watched and took care of the kids.  Just one of the sacrifices necessary to get on the road to wellness.  I was still in a decent amount of pain, but it's the type of pain that for the most part I could work through.  I mostly just slept and kept myself in the recliner.  I didn't even get on the computer much because I felt it increased my brain pressure issue.

Now I will fast forward to Wednesday night, February 1st. I had this feeling of intense pressure in my head the entire evening.  I had been messing around on the computer and I remember vividly once midnight struck into February 2nd I left a post on my brother's Facebook wall because it was his birthday.  I decided I would take a shower and then go to bed.  I went into the bathroom, looked at the tub and just felt exhausted and sick, so I decided to wait until morning.  I went to the sink to brush my teeth.  I started brushing my teeth and then I felt something warm hit my upper lip.  Then I felt it start gushing.   Blood, it was going everywhere.  I looked in the mirror and panicked.  Blood was pouring out of my nose and then I went to the towel closet and grabbed a handful of washcloths.  It was coming so fast.  I yelled at my husband to call 911.  At this point the blood was coming so fast it was pouring down my throat as well.  I couldn't breathe.  I was literally spewing it out of my mouth in order to keep my airway clear.  I remember asking my husband to help me get my clothes on.  Heaven forbid, I'm bleeding to death and couldn't be caught without a bra on.  That was seriously going through my head.  My legs were so weak, but I was afraid to sit down.  I thought if I sat down I was going to pass out and die.  The blood just wouldn't stop.  There were chunks of white matter coming out as well.  I was sure it was parts of my brain.  I had no idea, I just knew that if the ambulance didn't get here soon I was going to be dead.  My husband was on the phone with 911 trying to get them here and I called my mom and told her I needed her now.  I told her I was pretty sure I was going to die and I loved her, but an ambulance was on it's way.  She later said I was so hard to understand because she could hear all the blood gargling in my throat when I was trying to talk.  My poor husband couldn't go with me because the kids were sleeping. I thank God every single day that this happened while they were sleeping.  It would have been a scene that would have given them nightmares for the rest of their lives.  I told him I loved him and that I was so sorry this was happening.  I told him goodbye and not goodbye because I was leaving, but goodbye because I truly believed I was going to die.  There was so much blood and I was sure my brain was sliding out of my nose and down my throat.

We finally saw the ambulance lights and heard the sirens.  It was so foggy out that night and they missed our house.  Hubby grabbed our huge spotlight and flagged them down.  We actually met them on the curb.  I couldn't waste another second, because at that moment I didn't think I had much time left.  They got me on the stretcher and I told my husband I loved him and I was left alone with the two EMT's.  I explained that I had just had brain surgery almost two weeks ago and at that moment I swear they turned as white as ghosts.  They took my blood pressure and it was roughly 200/109.  They had me lay back some and hold the washcloths to my nose and mouth.  Leaning back seemed to slow down the bleed and off we went to the emergency room.  I was met by a team of people who wanted to be filled in on what had happened.  I had the most amazing and adorable nurse and the most lovely doctor.  I was surrounded by angels in that ER that night.  The nurse, bless his heart helped get me cleaned up.  I was covered in blood.  I'm sure I looked like something that resembled a remnant from Dracula's dinner.  He wiped me down, cleaned off my hands and they put a clamp on my nose to try and get the bleeding to calm down.  They also gave me some blood pressure medicine because they were afraid that it being so high was causing me to bleed even more.  My mom got there and kept me company and soon my husband showed up.  Thankfully we have family close by that was able to take the kids so he could come be with me.  I was a mental mess.  I had just survived the scariest moment of my life to date.  I never, ever want to live a moment like that again.

The Sphenopalatine artery is located below the sphenoid
sinus, which is the barrier they went through to access
my pituitary.  Very close to the brain.
They sent me off for a brain CT once the bleeding was stabilized.  They said my sinuses were completely loaded with blood, but as far as they could tell my brain was okay.  Thank God!  They ran all sorts of blood tests, kept me doped up to keep me from stressing out and also keep my pain level down. I kept having moments where I would just start crying reliving that nightmare.  I couldn't believe this had all just happened. They told me they were going to have to put one of those lovely nasal pledgets back in and inflate the balloon to put pressure on the area that was bleeding.  At this point we weren't really sure what was bleeding, but it was later confirmed it was my Sphenopalatine artery.  I was not excited about being fully awake while they shoved that thing inside my nose and into my sinuses, but I took it like a trooper.  I've been through enough hell, that this was just one small issue to deal with.  They put in calls to MD Anderson to see what they should do next.  In the meantime they contacted the local ENT who was on call and apparently he didn't feel confident enough to take on my case.  They got me as stable as possible and then I was shipped out of town to a bigger hospital by another ambulance.  I had never been in an ambulance before and I never care to see one again.

I arrived at the next hospital sometime in the morning.  I was exhausted and still wearing blood covered clothing.  They got me situated and then several groups of people came to see the freak.  First off, I had Cushing's, second I just had some rare artery bleed so I felt like a circus freak.  They all wanted to see me.  Then the most awesome thing happened.  The local neurosurgeon came in to talk to me and asked me if Dr. McCutcheon was my surgeon.  I told him he was and he said he recognized his work on the CT scan!!  He said he trained under him and knew Dr. McCutcheon very well.  What are the odds that this man here locally knew Dr. McCutcheon and was put in my path on that dreadful morning?  Very, very small odds, I do know that much.  He later came in to tell me he got in contact with Dr. McCutcheon and he was positive that what happened was my artery just gave from being weakened by Cushing's.  There are so many things that I think may have contributed to the bleed, but when it comes down to it I do believe it was just the stress of surgery and the damage Cushing's has done to me.  What a hellish nightmare.  They told me they were going to keep me at least four days to make sure it didn't spring a leak again.  During that time they kept my pain well managed and I mostly just tried to relax and keep my head back.  If I sat up I would start trickling blood again.  I hate the way I was always afraid I was going to spring another leak.  I almost wish they would have just gone in and cauterized the bleed, but what's done is done.  On February 6th, they decided to take the balloon out.  I was scared to death it was going to start bleeding as soon as they took it out, but it didn't.  They kept me most of that day to make sure I was okay and then sent me home.  Home where I had to relive my nightmare.  Thankfully my husband had gotten almost all of the blood cleaned up and very little evidence remained, however every single time I brush my teeth and look in that mirror I am overcome with absolute dread and fear.  It is something I am working through and each day it gets a little easier.

Coming face to face with your own mortality when you least expect it is something that makes you see life in a whole new perspective.  You really don't know how quickly it can all be over until it almost is.  This post was extremely hard for me to write. It's the first time I have ever put it into words and writing it makes me relive something that I don't like to visit often.


  1. Oh Dawn, so very scary! My eyes watered up reading it and I don't water up easily!!! I truly hope though that you can go on living and remember this experience for the positives that came from it being the way you now see life's fragility and also the way you see what your body has really been through so that you love yourself more and respect the disease knowing that for as hard as it fights to knock you down, you'll fight twice as hard and kick it's ass!

    I love you so much and I'm glad you're here to write and share your experience! Don't live in fear - live in awe of what you're capable of surviving!!


  2. I love you too, woman! You inspire me every single day. <3