Aortic Stenosis

[livingwith]

I am a 47 year old male that has always took care of my health. I never used drugs or drank anything other that water, milk and fruit juices. I started having problems with temporary double vision about seven years ago. I had my eyes checked and nothing was wrong there. My small town medial doctor just passed it off so I decided to go to another doctor for testing. After several tests it was determined I had an abnormal echocardiogram and was sent to a specialist. I had another echocardiogram r...Read the full article

[gingers]

I was born with a bicuspid aortic valve. I never knew about it. My co-workers were bugging me to get a checkup since I was in my 50's now and I hadn't gone to the doctor in a long time. So I went for a checkup the end of May 2005 and was told I had a heart murmur. I was sent to a cardiologist, after several tests, I was diagnosed with severe Aortic Stenosis. I was 54. I played sports all through school, rode horses, scuba dived, played some tennis, had a son, never knew anything was ticking away in my chest. I was scheduled for surgery in Aug 2005.

I had ignored every symptom I was having - never, ever thought I had a heart problem! My left shoulder ached, so I moved my heavy purse to my right side, the ache went away. Walked the dog, my left arm would ache so I put my hand up to my waist, the ache went away. My left ribcage was sore, so I stopped leaning over the wooden arm on my office chair. I had an explanation/excuse for everything. I hadn't gotten to the fainting stage yet, little did I know it was right around the corner.

Prior to surgery I had time to research on the internet and try and find peace with the fact I was having open heart surgery. Valvereplacement.com was a blessing. Nightmares and insomnia were normal occurances. I had no blockages. yeah! Met my surgeon. I had time to donate my own blood for my surgery. I wanted a tissue valve, I didn't want to be on coumadin. My father was on coumadin when I was a young child and he always had bad nose bleeds - I didn't want that! My surgeon scheduled a CT/MRI scan about 2 weeks before surgery. They discovered I had an anuyerism of the ascending aorta. (I don't understand why none of the pre-surgery tests did not reflect the anuyerism). I was no longer a candidate for a tissue valve. My surgery was 8/25/05, the day before Hurricane Katrina hit South Florida, where I live. I have a St. Jude Mechanical valve and a prostetic of part of the ascending aorta. I was allergic to many meds in the hospital but they got me through it. I never got in bed after I got out of Cardio ICU, I slept in the recliner. I had insomnia in the hospital and still have bouts of it from time to time.

Prior to surgery, one day I was watching TV and a little ticker-tape went across the bottom of the screen and it said something about a Mended Hearts meeting. What was that? I never heard of that! I went to the internet and did a search on Mended Hearts. They are support group affiliated with the American Heart Association. I joined my local Mended Hearts Chapter 161 before I had my surgery and they helped keep me sane, assuring me all along the way, before and after my surgery. I learned about a great cookbook from a Mended Hearts member I met on the internet. " The Coumadin Cookbook " by Rene Desmarais, M.D. I ordered it through Barnes & Noble and I got an extra copy as a thankyou gift to my cardiologist. He was so surprised, he had never heard of it. When I first came home from the hospital, I was diligent about Vitamin K levels. (okay I was terrified). I finally came to terms and RELAXED and learned to live with some modifications on Vitamin K intake. I'm no longer militant about it.

When I came home from the hospital a nurse came every day or so to test my PT/INR and check my vitals. Weeks later I had a physical therapist come to my house and we did simple exercises and walking throughout the house. I finally graduated to walking outside down the block and back. Fortunately my health insurance covered it. Then I graduated to rehab at the hospital gym - which was not covered by my health insurance but it was well worth the cost! Exercise is the key to getting better and building your strength.

My mom drove me everywhere. We referred to it as 'driving Miss Daisy' - me! One day I realized I was getting better - my mom's driving started scaring the heck out of me! L0L

I am on coumadin/warfarin the rest of my life. I'm told my mechanical valve will probably outlive me.
I have monthly blood tests, testing my PT/INR time at the primary's office. My cardiologist wrote me a prescription so I could have a portable InRatio blood test machine and I order testing strips - none covered by my health insurance. I can test my PT/INR in between monthly blood tests at the doctors office. I can take my InRatio kit with me when I go on vacation. I don't know why we cannot purchase these machines & test strips as easily as diabetics get their supplies. I recieved valueable information from PT/INR.com.

I live a pretty normal life. I do get black & blue sometimes or you bleed a little longer than usual from a cut - that's a tip off to check your PT/INR and your doctor will adjust your coumadin dosage. Mine was like a roller coaster in the beginning. Now I'm settled with 8mg Monday thr Saturday and 10mg on Sunday. I am able to take Warfarin so it is a big savings. With my home testing machine and my husbands math skills I sometimes adjust my dosage for a day or two. Some folks may be allergic to the dyes in the coumadin / warfarin, the white tablets have no dye -tell your Cardiologist if you have any reactions.

I'll be celebrating my 3rd anniversary from surgery on 8/25/08. We are truly lucky to be living in these times with all the medical advances and medical professionals saving and extending our lives. I am now a patient visitor for Mended Heart Chapter 161.

Ginger
Hallandale Beach, Fla.

[Dale]

I feel like livingwith and was happy to read ginger5's posting. I am 56 and last fall I was told I would need a new aortic valve in 5 years. I must have have rheumatic fever as a child but I don't remember and there's no record of it. I went back in April for a six month checkup and was told I'd need the valve in "a couple of years" and that I "might start getting some symptoms this year". YIKES! I have had a difficult time coping with this idea; it's taken months to get my head around it. I don't know anyone who has had a valve replacement under 75 years old! I have always been healthy - no surgeries, three kids.... Now, every time I get a twinge in my chest area or get out of breath I think it can be a symptom -- I just don't know! I go back in November again and I am looking into meditation, I am exercising alot and cleaning house - just in case.

I will look into the organization Mended Hearts although I can't find one listed in my area - maybe there is another support group. My family doctor and the surgeon sure don't have time to talk to me -- but they don't suggest any organizations that will. I guess as I get more into the system medically - I assume there will be other tests, etc I will find out more. YUK.
Right now it's a lovely summer.Good luck livingwith - I'll be thinking of you! Thank you ginger5 - we need stories like yours to keep us level emotionally. My husband actually had surgery for early colon cancer (a resection) in December and he came along fine after 6-8 weeks (he's all clear)-- I guess I am equating this surgery with his. And like you say, it could have been cancer... we all get something I guess!
Wishing you all the best,
Dale

[gingers]

Hi Dale,

You can contact Mended Hearts directly and they can put you in touch with a chapter near you.

To learn about your nearest Mended Hearts chapter, contact the American Heart Association office near you. You can also call 1-800-AHA-USA1 (1-800-242-8721) and ask for Mended Hearts support or log on at www.mendedhearts.org. Additionally, Mended Hearts can be reached on weekdays at 1-888-HEART99. Mended Hearts is a nationwide support group. They also have a support group called Little Mended Hearts for children.

Other support groups for heart patients may be near you. To learn about them, contact your hospital social service department or the state or local department of social services.

I did a lot of research prior to my surgery, thought I had all the bases covered. The day before my surgery I was fine, could squat down and stand back up, no problem. After surgery, no way! I could not believe how my body betrayed me! My spirits would be up one day and down the next. Rehab was the best thing for me - helped me get my confidence back. Made new friends there too.

Good Luck to you and be sure to keep a positive attitude.
Ginger

[gingers]

Dale, another thing. Once you have a new valve, you'll have to take antibiotics before any dental procedures. (Since my surgery, I've had a root canal done! You must stay on your blood thinner.)
Your primary or cardiologist can write a yearly prescription.

Since I have a mechanical valve, I now tell people I am the bionic woman!

God Bless,
Ginger