a 501c3 non-profit public benefit organization
Dr. Peter Tsai
Survivor / Founder / Chieftain
Contributing Writer / Secretary / Survivor
Contributing Writer / Caretaker
CONTRIBUTING WRITER / SECRETARY / SURVIVOR
In September of 2013, I found out I had an abdominal aortic aneurysm. It was 4.6. It was found in August of 2012 and I was not informed by the hospital. I had a CT and was admitted for acute pancreatitis.
I was terrified. I was 42 and my dad hied 10 years earlier at 57 of a ruptured AAA. I did not know it was hereditary and did not get scanned. This is why I always have something to say to new members. I couldn't save my dad. I'm certain he knew and didn't want to sorry us or under go surgery. I wish he would have. I would have made him have surgery. He never went to the doctor and was terrified of needles. He was a fireman in the army when he was young. He was a good man. He worked as an electrician at a steel mill in Pennsylvania (which is where I grew up).
When I got the call from my Gastroenterologist's office regarding another CT, they said everything is find and your AAA has only grown .1mm to 4.6. I was floored. My life stopped. There was a ticking time bomb in my stomach that could explode at any second.
I got a referral to a very well known and highly recommended vascular surgeon. I lost my job 2 weeks later and now had no health insurance.
The vascular surgeon said he would wait until 5.0 and explained how he would perform endoscopic surgery to implant a $15,000 TriVascular Ovation Stent graft into the AAA. I held a real one in my hand. It felt like tightly woven paper. I believe it's mostly some type of thread with metal one end to anchor it. I had no clue what other options were available. I usually research everything online to the point of what people may consider ridiculous. My mom died of breast cancer at 49 in 1997. I felt helpless so I researched treatments and questions she should ask to the point that I was similar to an addict. I couldn't stop. I guess I thought I could help her (hopefully it gave her some hope). So when it was my turn to ask questions, I failed miserably. I was not aware of the differences of open surgery. My doctor only performed EVAR (endovascular aneurysm repair). At my age, I, and some doctors, would choose open repair as more permanent solution. There haven't been any studies on long-term stent grafts. Most of you know that EVAR has a quick recovery and you can usually leave hospital the next day. He said I was his youngest patient. He told me I didn't have any restrictions except contact sports. I talked to my primary care doctor and he strongly recommended no weight over 5-10lbs. I listened to him because I trust him.
I had another CT scan 2 months later (I don't remember why) and it had grown to 4.9. I believe severe stress to be the cause. I had surgery on February 21, 2014. 12 days later, I was back in the ER with an infection in one of the incisions in my groin. I spent 8 more days in the hospital. Also before surgery, I failed the stress test and had a heart cath. They found a 60% blockage in my right main artery.
I haven't felt good since the surgery. I've been sedentary and full of guilt, depression, anxiety, irritability, PTSD, fatigue, fear and a few positive emotions like lucky, grateful, appreciative, etc., but mostly negative. The best thing is I look at the world in a whole new way and take nothing for granted. The Facebook support groups have been so helpful to me. Often I feel worthless and sharing my thoughts, knowledge and opinions help me and hopefully others.
I have bad days and terrible days. Just recently, I can honestly say I've had some good days!
I did the Got Heart N Sole 5K with several survivors and caregivers in April of 2015 and they lit the fire under me.
I started a new life at the beginning of May 2015! My goal is to swim every weekday.
It is so hard on most days to get myself out of the house. I feel exhausted later in the day and find myself going to bed by 8 or 9. There have been days I go to bed as early as 7!
This frustrates me because when I was 20 years younger, I would feel tired but energized at the same time. I'm 44 so my thinking is: I was sedentary for over a year. It will take much more than a few months of swimming to see any significant changes.
A friend told me once you do something for around 30 days it becomes a habit. I feel like I'm letting myself down if I don't go. Even though I'm only seeing a small benefit now, I refuse to give up on myself or on the impact my progress means to my friend and family, especially my fellow Aortic Warriors. I have all of you to thank for that motivation and encouragement.
Thank you Aortic Warriors for showing me that I can improve my quality of life!
I hope others will follow!