Amanda and Skyler
This is one of many True Story interviews in which we talk to people who have experienced interesting/challenging/amazing things. This is the story of Amanda and Skyler and what happened when doctors recommended that Skyler be removed from life support.
Tell us a bit about yourself!
Hello, my name is Amanda and I am a 20 year old artist. I lived in North Carolina most of my life, but I moved to Washington recently to live with my boyfriend.
How did you meet your boyfriend?
We met about 5 years on Myspace. We got along famously, but that ended because of the distance. A year ago I had a dream about him that made me want to reconnect with him. When we started talking again, everything fell back into an even more perfect place that before. One thing lead to another and I moved cross country for him!
Did you have any inkling your boyfriend was sick? How did you find out?
No one had a clue. Skyler had what is call an Ateriovenous Malformation (AVM), which is basically this huge tangle of arteries and veins that usually develops in or on the brain before birth. I only became aware of it after he had collapsed on the bed in front of me with stroke-like symptoms.
What happened after he had the hemorrhage?
I immediately sought out help. He lost consciousness right before the paramedics arrived and he was taken to a hospital in the next big town, where we found out that he had massive intracranial bleed. He was airlifted within 30 minutes to Harborview in Seattle to see a neurosurgeon.
Skyler underwent 8 hours of surgery, removing half of his skull and cutting out the AVM. He later went through another 4-6 hours of surgery to finish removing the AVM.
How serious was his condition?
Things certainly were not looking good. We found out a week later that half of his brain was dead, including parts of his brainstem. He showed no good signs of a future recovery, and this is exactly what the doctor told us when he suggested we remove his life support.
How did you feel when the doctors recommended that your boyfriend’s life support be removed?
I was completely devastated, but it certainly snapped out of the denial I was in. It was a moment of defeat for me, but I did what I could for him and that was expressing his wishes to his family. Skyler had told me that if he were ever doomed to be a vegetable, he would want life support ended.
Did you (or anyone in his family) ever seriously consider removing his life support?
I wasn’t ready to take it that far. The doctor had suggested that in the meantime we sign a DNR (do not resuscitate) and that was something I felt comfortable with. His father and I wanted to at least do that for him, but his mother was completely against doing that much.
How is Skyler doing now?
Only a little over a month has passed and he is following commands now as well as answering questions by blinking and squeezing hands. Doctors are completely shocked and are now talking recovery!
What advice would you give to someone in a similar position?
Do not expect yourself to take it easy through this. The emotional rollercoaster comes with this type of situation. Go to support groups, get all the information you can as well as emotional support. It’s difficult, but give everything time. Brains are so unpredictable, and usually you won’t know what kind of recovery there will be until some serious time has passed.
Have any of you had friends or family on life support? Any questions for Amanda?
I was with my grandmother in the last few months she was alive, but she had been sick for a long time and we all knew what was coming. It was enough just to know she would be surrounded with friends and family in the end. But Amanda, I can't imagine what it would be like to watch the person you love suddenly get sick or to have doctors tell you not to hope he'll get better. But maybe there's a little hope. My heart goes out to you, Skyler, and his friends and family. Take care.
fantastic post.
Skyler will definitely be in my thoughts
Such a strong woman you are, Amanda. I wish you all the support you need in the coming time.
The brain is an amazing thing. Hope his recover goes well.
The brain is an amazing thing. (My son had a hypoxemic/ ischemic event — essentially a stroke — in utero, so I've had to learn a lot about brain plasticity.)
My dad's first wife was struck by a bus and went into a coma and my dad signed the papers removing her from life support (this was in the 70s — I was born two years to the day after she died). I'm guessing it was one of the hardest things he's ever done in his life.
All the best to you and Skyler (and to his mom and dad…).
I had diagnosed with AVM two years back.. and I guess that denials is what kept me back from getting the right treatments..
I am scared..