Friday, January 29, 2010

The Reason I Celebrate

I arrived at UW Hospital on January 29th, 1996 and I was amazed that my cardiologist, Dr Catherine Otto, was already there as they wheeled me in to ICU. I didn't realize that the ambulance ride had taken us so long that it was now early morning. They transferred me to a bed and were just starting an echo as Dr. Otto talked to me. She told me I would be having surgery but that they would wait until Rick and the kids arrived to see me before they had to take me in.

Just then the echo tech touched her on the back and she turned and looked at the screen, then she turned back to me very calmly and said "scratch that, you've dissected, we're going to surgery now." (A few years later that same echo tech did my echo again and she described the horrible moment of putting that transducer to my chest and seeing the dissection and really grieving because I was so young and she thought I wouldn't survive...all while trying to maintain a professional and calm exterior) Everything kind of exploded into action then and I remember telling them that if I didn't get to talk to my husband and kids I needed paper so I could write them each a letter. So they brought me blank progress notes from the chart and I wrote to all 3 of them, telling them that I believed God was going to save me but that I wanted them each to know how special they were and how much I loved them. So they're busily prepping me for surgery and I'm writing letters. (I always feel like I need to apologize to Rick at this point because those were just a little hard to read) And that lack of fear, that peace that I described yesterday, remained.

As we got to the OR I asked if the whole crew was there who would be in my surgery because I wanted to talk to all of them before they put me under. So they all gathered around and I told them that I wanted them to act like I was awake as they did the surgery. I didn't want jokes made about my body, I didn't want any negative talk, I didn't want them speculating on how bad things looked. They all agreed and so I said we could go ahead. My mom joked that the surgeon had to leave the room to say "oh shi*" when he saw how bad my aorta was so that he wouldn't break my rules. But this is when the story really got easy for me. I was asleep as Dr. Salim Aziz placed a St. Jude mechanical aortic valve and an aortic graft made of dacron. I missed the drama that my family and friends lived through as they spent 16 hours saving my life. I missed when they thought they had completed the repair and did a transesophogeal echo and found that the dissection was actually longer and the graft needed to be longer as well. I missed when they brought me back to ICU and let Rick see me (he said I looked dead, I was super pale and on a ventilator with tubes and wires everywhere) and then found that I was bleeding and had to go back to surgery for the 3rd time. My Mom said that as time passed she went from praying to begging God to save my life. My friend Kristin said Dr. Aziz told her he had never seen someone whose aorta looked like mine actually make it off the table alive. He said it looked like a grenade had exploded inside my aorta; it was shredded. My family and friends remember the fear and the waiting and the warnings that being on cardiac bypass for 16 hours can cause some major brain damage. They remember me waking up, they remember wondering if I would know them, they remember me begging to have the ventilator removed and me crying for my Mom when they wouldn't do it. I don't remember any of that.

And I guess this is where the story could end. I could say that a team of very qualified and skilled medical professionals saved my life and I could be forever grateful to them. And I am, UW Hospital gave amazing care. But that's not where my story ends. What I do remember is just being wrapped in God's love. I remember feeling closer to him than ever before or since. I remember feeling his actual presence. And on the first day that I was really awake or actually lucid Dr. Aziz poked his head in my door and said, "you know you have a friend upstairs, right? You know I can't take credit for this." And I remember being so thankful and feeling like God had left me here for a reason. That I needed to make sure that the people God placed in my life knew how much I loved them and how much he loves them.

It's easy to let time swallow up the miracle. It's easy to get caught up in the cares and details of daily life and forget that each day is a gift. So that's why I tell my story, that's why I celebrate this anniversary. Every time I tell it I'm re-experiencing the amazing work that God did, and continues to do, in my life. I think that's worth remembering.

Thursday, January 28, 2010

Scary Anniversary

My husband said to me this morning, "today's the scary anniversary...tomorrow's the good one." 14 years ago today my aorta dissected. Now you have to pause after you read that because I can't ever say it without a pause in my speech.

Backing it up, I knew the possibility existed. And the possibility terrified me. I was sure if my aorta dissected I would die. But I had always been told I was fairly low risk, mildly affected, my aorta was slightly dilated, but it hadn't changed much. I went in yearly and lived my life basically ignoring the fact that I have Marfan Syndrome.

Then, bam, on January 25th, 1996 my cardiologist called to tell me that she had been reviewing my latest echocardiogram and didn't like what she had seen. We scheduled an appointment and another echo and she told me I was probably looking at surgery within the year. Wow, I had a 10 month old baby and a little girl who was 4, I couldn't have heart surgery, I didn't have time.

January 28th was Superbowl Sunday and we had plans to go to my sister's house. We woke up to lots of snow and ice and decided to go hang out with my sister and her family anyway. But I didn't feel good. And we had a nice day but I really wanted to stick close to my husband and the whole way home I kept feeling like I couldn't breathe. I thought it was because of the heater blowing in my face.

So we got home and I nursed and rocked my baby to sleep and then just sat and held him for a long time. Finally I laid him down and went to brush my teeth and noticed that the vessels in my neck were all standing out. And I felt this horrible pain in my neck. I told my husband something was wrong, that my neck really hurt. He offered to rub it and I told him he needed to call 911, to tell them that my aorta was probably dissecting. The pain radiated from my neck up to my jaw and finally down to my chest. Sitting on the floor in my living room waiting for the ambulance was horrible. I hurt so bad and I was so scared that I was dying. 2 rescue crews came up to the house and the first thing I said was "don't wake my kids, you'll scare them", the second was "don't let me die". I was terrified, I was 28, too young to leave my husband and babies. Then a woman walked through the door with the 2nd crew and I felt this relief. I didn't know her but I felt something. She came and sat next to me and I told her they couldn't let me die. She said they were going to take care of me and then I asked her if she prayed. She said "all the time" and I said "then please start praying." And she did. She didn't pray aloud, but I instantly felt peace. All of my fear evaporated and I knew that God was taking care of me and I was going to be ok.

Now that's what I knew, but my husband, my parents, my siblings were all still terrified. I was transported to the hospital closest to my house and I told the ER doctor that I was probably dissecting and asked what they were going to do to assess that. He told me an EKG and cardiac enzymes. I told him that wasn't going to tell them anything and they needed to do a CT scan or at the very least an xray and echo to look at my aorta. So they ordered the CT scan and found that my aorta was really big, but they missed the dissection. They needed to transfer me to a hospital that could handle heart surgery and I wanted to be transferred to University of Washington Hospital. They were going to air lift me and then decided that I was stable enough to make the 33 mile drive via ambulance. The roads were sheets of ice and what should have taken 40 minutes actually took hours. The chains on the ambulance tires broke twice and they stopped and both workers got out to fix them. I remember lying there alone thinking "wow, God, this would be really scary if you weren't here and I was actually alone." But because I knew God had this one, rather than fear I just felt this amazing peace, that peace that's beyond all understanding. I am a person who goes to fear and anxiety easily. But I truly didn't have any. I felt like I was wrapped in the arms of the one who had made my body and he was the one who would make sure that I was taken care of. So I didn't need to be afraid.

Tune in tomorrow to see if I survived...;-)