The Diagnosis

I was diagnosed with a Congenital Heart Defect, which is called an Anomalous Left Anterior Descending Artery. What that means is that instead of having two arteries on the left side of my heart and one on the right mine were reversed and the one on the right that should have been on the left was crossing over between the aorta and the pulmonary artery and getting pinched when my heart was stressed. Stressed due to physical exercise, emotional stress, anything that made my heart work harder or faster. I was born with this and over time as we grow older our arteries become less flexible and this lead to it being pinched, thus reducing the blood flow and causing me chest pain or angina, as well as other issues.

This led to my being in heart failure as the blood was not flowing well. My ankles and other areas of my body were swollen due to retained fluids, including internally. I was short of breath and yet when I went to the doctor thinking it was my asthma they said my lungs were clear. I had trouble breathing and coughed a lot when I lay down so slept with multiple pillows. I was coughing and wheezing, but my lungs were clear. I was tired or fatigued and yet my iron level was fine and my thyroid was fine. My heart often felt like it was racing, but that was normal (or so I was told). I was not eating much, but gaining weight, and feeling bloated. I was told to exercise more. We road almost 1,000 miles on the bike the summer prior to my diagnosis and I worked out, but I needed to exercise more? My brain was foggy, but I figured it was because I was tired, little did I know it was actually related to my heart. I was not sleeping well due to sleep disturbances. I had a few twinges in my shoulders and arms, but thought they were from over doing, or that the bike seat needed to be adjusted. I also put off a few chest twinges to stress as they came and went quickly and I was very stressed between work and my father dying of cancer. They never lasted so I never thought of them being related to my heart.

No one ever put all these symptoms together, even though I asked my doctors. I even asked about my circulation because my feet were always cold. Sure I had high blood pressure and retained some fluid so they gave me blood pressure med and water pills. It helped but the problems kept getting worse. I could not climb a flight of stairs without getting winded halfway up. It was not until the chest pains started and were bad that I went to the doctor and got real tests and real answers.

It is scary to think I could have died, just dropped dead. Only 1 to 2% of the population has this defect and most do not know about it until they are dead. Actually they do not know, their families do. I was one of the lucky ones. I had symptoms. It just took along time to get the doctors to put the pieces together. Please if you have symptoms, push for testing. Do not wait. I could have died if I had not finally had chest pain and would have been much better off if I would have gotten this diagnosed before I did. I was a walking zombie by the time I was diagnosed. My husband has said many times he does not know how I kept on going as bad a shape as I was in. I do not know how I kept on going either. I was just functioning on autopilot and really most of the last few months prior to my surgery are a blur as I was just there. I slept for hours on end just to make it through a day of work and came home to sleep.

In fact now that I think about it I probably should not have been driving because I know my reflexes were not their best. My brain was not focused and I was not my best at anything. I was just functioning on autopilot. I was in bad shape and am very lucky to be alive today. I was blessed and thank God for my being here and for my health.

Heart Blog 2

Heart Blog Two

I was scheduled to see two doctors and have an echocardiogram on May 12th for a consult at the University of Washington Regional Heart Center when Tom and I flew down May 11th, planning to return on the 16th. We knew that surgery was a possibility, but not much more than that at the time we left Anchorage. They told us to plan to stay at least one extra day in case they wanted more tests, and that there was the possibility they would do surgery. Since there was the possibility of surgery I went for first class. I was not coming home in the cattle car after being cut open.
We boarded our flight a little apprehensive, and looking for a solution to my problem on May 11th. The flight was pleasant and I relaxed some in the comfort of my seat. I also decided that I am not traveling in the cattle car again. It is first class all the way for me.
We landed in Seattle and got our rental car and joined the mob of vehicles on the road. I am so glad Tom was there to drive. I would have gotten off and turned around to go back home. There were so many cars. I complain about traffic in Anchorage and we have no traffic at all compared to Seattle. I was a nervous wreck and I was not even driving.
We arrived at the hostel, which was listed as one of the places giving discounts for patients of the University of Washington called the Collegian. It was a disaster. For one I requested a queen bed. I got a room with three single beds that were set up like a dormitory. It was dirty, and had a smell. There was animal dander of some kind in the room as it drove my allergies insane. Tom propped the two windows open so that the smell could dissipate and I got on the phone calling to complain. They could do nothing about any of the issues. I got out my list and called other places on it and found us a different place to stay the next night and for the rest of our time in Seattle. Tom moved the beds around so that two singles were side by side to make a double and we put our suitcases in the bathroom as it was the cleanest looking part of the room. We went out for a walk and to get something to eat. We found a coffee shop and had a chai and a coffee and asked where was a good place to eat. They young man there recommended a Greek place down the street a ways. We thanked him and set off with our drinks to explore the area. We were in the University area and found some interesting places. We also wandered into the University bookstore, which was huge compared to the University of Alaska Anchorages. I bought a few post cards and we got a map of the area and continued on our walk.
We stopped to eat at the place that was recommended to us. I had a Gyro and a side of Hummus. Tom has the Gyro platter and it was more than enough food. We got two pieces of Baklava to go and went to explore some more on our way back to the hole in the wall. Needless to say I did not sleep well that night and could not wait to get out of there and change to a clean hotel.
We headed off to the University Regional Heart Center for my appointments and some food. I saw Dr. Otto and her fellow, a doctor studying under her. She specializes in Congenital Heart Defects in Adults. Both of them told me that I was having surgery to correct my defect. There were not really any other options. They could try playing with my meds but that would not fix it. Surgery was the best option. Until that point surgery was an option that might be considered, but it was not definite. Now it loomed in front of me and it was scary as hell. I mean I knew that they would stop my heart and I could die, just not all the specifics at that point.
We changed hotels, and got some lunch before heading back to the University Regional Heart Center for my echocardiogram and to meet with the surgeon, Dr. Verrier.
The echocardiogram went smoothly and the technician was very nice, explaining to me what I was seeing on the monitor and what she was taking pictures of, etc... It was very interesting to watch and learn. I thought it was pretty cool to see the colors, which showed the blood flowing in and out of the chambers of my heart. It was relaxing and I was comfortable.
We sat and waited in the waiting room until time to see the surgeon and his fellow. They were both very nice and I felt comfortable with them.
Dr. Verrier is a professor of surgery and chief of the Division of Cardiothoracic Surgery. (http://www.medical.washington.edu/bios/view.aspx?CentralId=29515)
I was very comfortable with him and felt that my life was in capable hands. I felt reassured that I would be fine, even though the list of possible things that could happen was scary as hell. They went over all the things and explained them. The list included stopping my heart and putting me on the heart lung machine, that I could have a stroke or a heart attack, or I could die. My head was spinning at that point as I signed the papers for the surgery.
Dr. Verrier confirmed the diagnosis of a congenital heart defect, which is called an Anomalous Left Anterior Descending Artery. What that means is that instead of having two arteries on the left side of my heart and one on the right mine were reversed and the one on the right that should have been on the left was crossing over between the aorta and the pulmonary artery and getting pinched when my heart was stressed. Stressed due to physical exercise, emotional stress, anything that made my heart work harder or faster. I was born with this and over time as we grow older our arteries become less flexible and this lead to it being pinched, thus reducing the blood flow and causing me chest pain or angina, as well as other issues.
They gave us three dates for surgery all in the very near future and Tom said we would take the first one. They had said the sooner the better. One week until my life would change...I prayed for the better.
Every one in the clinic was helpful, friendly, and very upbeat. It helped make me feel calmer and more relaxed.
After signing my life away we headed out to the car to sightsee. Once we were in the car I started to cry as the fear of everything set in. I could die on the operating table, or become permanently disabled. I was scared to death and we still had to call my mother and my sons and tell them that surgery was no longer an option, it was a definite and scheduled in one week.
My mind was racing a million miles an hour with regard to if I died, and what would happen to my stuff and my family and, and, and,...
I think the hardest phone call for me was to my mother. I tried to be brave but ended up in tears. I let Tom tell the boys as I could not be brave for that.
I was looking forward to and yet dreading my surgery as I was afraid. We spent the next week relaxing and touring Seattle around pre-op appointments and blood work.