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5 June 2003
I have been reading all of your stories and it really helps to know that there are other people out there going through similar circumstances. My husband, Wes, is an AVM survivor. March 23, 2003, a day which will live on in my mind as long as I live.
He is only 26 years old and my best friend in this entire world. I have always believed and will forever believe that Wes and I were meant to be together. On March 23, I thought I was going to lose him forever.
On this weekend, we were visiting my parents in Virginia. On that Saturday, March 22 we went to bed like any other night. Wes and I talked about what time we were going to leave VA and go home to our apartment in Delaware. I said I love you and off to sleep we went. Well at around 11:30 that night Wes jumped out of bed and said he heard something. I was half asleep myself and said, "No, go back to sleep, you're just dreaming." So maybe 10 minutes or so pass and Wes is rolling in bed saying his head was hurting so bad and that he felt the pain moving around in his head. Well, at this point, I was like go take some Tylenol, and he did, with no questions or complaints. Well, maybe another 5 minutes pass and I awoke to Wes in bed on his hands and knees rubbing his head on my shoulder. Well, at that point, I knew something was horribly wrong.
I get up and turn on the light and he is as white as a sheet. He was complaining about me getting up, he thought it was just a headache and it would pass. But I could tell it was something bad because he is not a complainer and he is so pale. I ran down the hall to get my mom and said Wes is sick, there is something wrong. Wes followed me out to the living room and was walking around - trying to "walk this thing off" but you could tell he kept getting worse. So I said "I am taking you to the hospital, something is wrong." With much protest, Wes eventually looked at me and said "Let's go Bets."
We go back to the bedroom to put some clothes on and right as I was putting Wes' shirt on he starting vomiting. I mean he was not in control, I have never seen anything like it. He just looked at me so scared and I just screamed "CALL 911" an ambulance had got to come, something!!! Well my parents live in a very rural area and my Dad was awake by this time to my screams and he said "I can get him there faster than any ambulance, lets go" Well, Wes was at this point still on his feet, he was vomiting and vomiting and my brother practically carried him to my car. All the way to the hospital Wes was sick and he was in a cold sweat his head was moving all over the place and he was still kind of with it because he remarked on how cheap the gas prices were and assured my dad that he did have the car in drive and not to worry.
Well, we make it to he hospital and Dad drops us off at the Emergency Room entrance and I go around to help Wes out of the car and he is so weak that I had to help him up, but he walked in. I tried to hold his hand but he did not squeeze back, he was so pale and I knew that something was so wrong!!!
The last thing he remembers from that night until 3 days later is giving the admitting nurse his insurance card and drivers license. He went with the ER nurse to be observed. My Dad keep saying it has to be food poisoning. I was like no Dad, we would all be sick because we all ate the same thing, fried shrimp. And I have seen Wes eat seafood so many times without this reaction, seafood is his favorite.
Well, the nurse came to get us in what seemed like hours, but was only 30 minutes or so. I thought great I can see him, he probably has some kind of flu or something. Well, I turned the corner and there was the ER doctor with what I now know well as a CAT scan image of Wes' brain. I am no doctor, but I saw a large white mass on the left side and I knew it was awful news. The first thing he said to me was "Are you going to be alright?" Well, you know there can't be good info coming from an intro like that. He proceeded to say things like "He's in really bad shape" "He has had a massive rupture, we don't know what's going on" "We have called the helicopter to come get him" "He will not make it to Sentara Norfolk General (a 2 1/2 hour drive) if he has to go by ground" I felt like I was going to pass out, they let me see him and he was unconscious at this point. He did not respond, he was on oxygen, they had taken all his clothes off and were prepping him for flight or an ambulance ride. They had to intubate him and the doctor said my dad and I had to leave when they did this. Well, I was insane at this point. I am only 26 myself and was crazy thinking he was going to die!!! And I had just talked to him. I just held his hand and looked at his wedding ring, knowing that on the inside was engraved "FOREVER".
Well, thank God that the helicopter could come and get him and he was rushed to Norfolk Sentara. He went into a coma on the helicopter ride. I could not go of course with him, but my dad and I made the drive over and that is just one big blur, I thank God as well that I did not have to make that trip alone. When we got over to the hospital we went to the ER there and said we were Wes' family and the nurse just looked so sad and told us to have a seat. Well, my heart sank and I thought to myself, oh my GOD!! NO!!! So I anxiously waited until they called my name and I was immediately met by Dr. Petra Gurtner, she is an angel!
She told me that Wes' condition was worsening as we spoke that they had no time to do an angiogram that they had to do a craniotomy right away. If I had not gotten there in the next 5 minutes she was going to operate on him even without my consent. I wanted to see him and I could not, he was already being prepared for surgery and I would have to wait. She had no clue what she was going to find. All she knew is there was some sort of hemorrhage and hydrocephalus had already set in. After the 5 hour surgery Dr. Gurtner came in with good news, he had survived the surgery, they needed to do an angiogram to see if there were any other damaged blood vessels. They had found two and his brain was not in as much stress as she had anticipated. But, again THANK GOD there weren't any more found. After 16 days in NICU, several catscans, angiograms, a ventricular drain in his head the entire time. Dr. Gurtner did not have to put in a shunt! He was prepared for that surgery twice and both times she canceled it due to his tolerance to the drain being clamped. NOW THAT IS A MIRACLE! We live in the house next door to my parents, where my grandmother had lived many years before her death 3 years ago. We left our apartment in DE and I left my job of course. Wes is on disability from his job.
Well, here we are on the 4th of July. Wes had an EEG test two weeks ago to test the brain waves due the fact that his Dilantin levels have been well below therapeutic range. He has never had a seizure and they just wanted to see what's going on. Well, the results weren't so good and we are back to square one. We have to see another doctor and have more tests and it is just never ending.
But the one thing I am thankful for is Wes is alive, with minimal challenges. His short term memory has changed as well as his personality - he is actually funnier and more intense and passionate about things. He can't drive and can't return to work yet. But he is alive and I love him so much and I am so thankful for every single day!!!
Here is a story from a family members perspective. May it give you all hope that you are not alone. I know all your words have helped so much. Wes and I pray for you all every day!
Update: 24 December 2006
Wes is doing so well, we now have a 13 month old daughter who is keeping us on our toes. He is now on Keppra not Dilantin, though he never had a seizure, the scar tissue is there on his brain. Three or so months ago he had his 3 year follow CT/Angio and ALL IS CLEAR. NO blockage, no issues.
Wes turned 30 this year and we actually met the flight nurse who was on the helicopter with him that night as birthday surprise. What a wonderful woman Denise is, she is forever a member of our family.
There is not a day that goes by that I don't thank God for my life. My husband and my daughter, my world. May you all, no matter what life is dealing you right now, know there are people here to support you. My story was fortunate enough to end so positively and happy, but by the grace of God, I know it could of have been so different if the doctors hadn't of been so sharp...the fact is life is so uncertain and we all must step back and appreciate each minute, one second at a time. I don't want you to think that I just live in this fantasy world, don't get me wrong, life gets back to "normal" and we argue about "real world" topics...Wes leaving his socks on the floor, Betsy not running the dishwasher....who will pick up our daugher from day care...how can we AFFORD THAT!!!!!!I really do TRY to stop myself and think about what is REALLY important, it's not those things, it's each other and our daughter's happiness, the fact that we can share our lives together forever is the best gift of all.
Discussion, comments, or questions: Betsy Boyer
© Copyright 2003 Betsy Boyer
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