Helen and Eric
I'm a 48 year old full time wife and mother. My husband Eric and I met when I was only 16 and have been married for 29 years. Together we have 4 children, ages 27, 24, 21 and 19. My husband has been transferred a number of times and through each of our moves I have been responsible for making the transition for our children easier. We now live in Tennessee and enjoy home improvement projects as well as traveling extensively. I have always had heart disease. I was diagnosed with congenital valvular heart disease when I was 5 years old. Through the years I have always learned to listen to my body, I know when something is wrong. It was this self-awareness that saved my life.
My Journey Begins At A Young Age
23 February 2005
My journey begins at a young age. At five years old I am taken in for my kindergarten physical and it is discovered that I have congenital valvular heart disease. My aortic valve suffers from not only insufficiency, but stenosis as well. I am seen by a slew of cardiologists shortly after who limit my physical activity, no gym class, etc. I am told that I will most likely have to have surgery to repair or replace the valve sometime in the future.
I am followed closely by cardiologists on a yearly basis and my stenosis and insufficiency do not seem to worsen. Still I follow up every year because the physicians reveal that the valve will deteriorate rapidly when it happens.
I marry, have 4 successful pregnancies resulting in 4 beautiful children, all while being followed by the cardiologists. In May of 1992 I visit my cardiologist in Colorado, shortly before moving to California due to my husband's job transfer. At that time the cardiologist remarks that there has been some change in my echo results, not significant, but definitely worth watching. Perhaps surgery will be sooner rather than later, but not imminent.
In November of 1992 I begin to feel extremely tired, short of breath, lack of energy. I find a new cardiologist in California and he runs all the tests, confers with the doctors in Colorado and decides that there has been more change in my results than should be normal. He has me come back in February.
In February 1993, the results again show significant change. They decide to do a heart catheterization and have an incredibly difficult time getting the catheter past the valve, it's just way too narrow. Aortic valve replacement is scheduled for two days later. They choose a prosthetic valve, noisy, but a comforting noise.
The prosthetic valve requires that I be on coumadin for the remainder of my life as well as regular INR checks. In 1997 I had symptoms of a clot on the valve and I was admitted to the hospital for a period of three weeks. Surgery is advised at the time to replace the valve, but I do not want to undergo open heart surgery again , so I decline. My symptoms disappear, perhaps the heparin for three weeks helped.
In 2001 I suffer a stroke, I was paralyzed on my left side for a bit, but have recovered fully. In 2003 I'm hospitalized with severe hemorhaging, requiring 7 units of blood as well as a hysterectomy. The coumadin made a uterine polyp bleed excessively. Finally I think I'm in the clear. Not so.
In January of 2005, I'm not feeling well, run down, my valve and heart appear to be doing strange things. My throat hurts and there is a huge bulging pulsing throbbing in my throat. I call my cardiologist who insists I call 911. My blood pressure is very high, the emergency room doctors do a cat scan of my neck and of my chest and discover that I have a 5.7 cm aneurysm of the ascending aorta, possibly caused by my valve mal functioning. Not really sure of that. I have to undergo every test imaginable, heart cath, transesophogeal echo, colonoscopy and endoscopy to rule out any other possible bleeding, multiple cat scans etc. The doctors refuse to let me go home in the interim, they fear my valve may be malfunctioning and I need to be in the hospital.
Two weeks after I'm admitted, I undergo valve replacement and aortic aneurysm repair with a SJM Masters Series Aortic Valved Graft. Six days later I'm released and doing well. I'm 48 years young, so having the surgery wasn't near as traumatic as it could have been had I been older. I'd have to say that this open heart surgery was much more difficult on me than the one I had when I was only 35. The scar tissue from the first surgery has made the healing process a little more painful. In addition, whatever pain meds they were giving me in ICU, were not working very well, I was told that sometimes this happens in people that have had repeat surgeries, again they blamed it on the scar tissue from the last surgery.
I can only say that I'm glad to be alive and very glad that I listened to my body which told me that what was happening to me was not normal. Had I waited, there is no telling how long it would have been before the aneurysm ruptured and I would not be here to see my husband, children and grandchildren who are yet to be born.
Discussion, comments, or questions: Helen Karl
© Copyright 2004 Helen Karl
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