Oct 17
cahuston
cahuston , Posted on SUPPORT NETWORK Blog

Worried/Scared

Hi. I'm 51 and have been waiting 16 years for either my anyersym or my valve to fail. The aortic valve has finally hit severe, .80. I have an appointment in 3 days to see a surgeon. Haven't met with one since my anyersym was firs detected. That guy just said he wasn't going to fix it and left. No explaination. Now I know it was because it wasn't big enough.
Other than my husband and service dog, I have no family within 8 hours or so of San Antonio. Our kids are in no position to come help or even visit. Out side of the people we know in Scouting, I know no one.
I'm worried about how I will handle the pain. I have a very high tolerance to pain, but when that is hit, I'm a mess. I also have a high tolerance to meds. I'm also worried about after I get home. My husband works for the Air Force, GS job. He can't take every day I may need off because of his job, 
Not sure how to get ready. I know I am slowing down quickly. I sometimes get these little jabs in my chest, I'd almost say like a stab but differently not that painful. My legs swell occasionally. I'm sure there is more.
Can anyone who has been through a OHS give some advise? I hope the acending and arch anyersym will be fixed at the same time.
4 Comments
  • sam57
    sam57,
    Hi cahuston, I was born with a Bi-cuspid aortic valve and had the Aortic Arch dilated to 4.2 CM. When it was time to fix the valve, the surgeon said he would fix the Aortic Arch dilation at the same time. We all experience pain at different levels, I was released from the hospital after 5 days without pain medicine. My pain was under control. I had the old fashioned full opening of the sternum and was doing well, until I started coughing. The pillow is your friend. I did wind up with about 10 days of pain meds after surgery, but only because the blood pressure medicine caused me to cough continually. We all reach a bit different and I hope that your pain will be well controlled before you leave the hospital. The physical therapy folks will help you to move properly so that you can reduce the stress on your incision. Stay positive, the progress is slow after surgery, but steady. Walking and a positive attitude will get you through this time. I also had a home nurse that came in once a week and a monitoring system to help me be comfortable that I could be home safely. Please ask about home care after the procedure. Sam
  • AHAASAKatie
    AHAASAKatie,
    Thank you for sharing your story with us. We have a strong Heart Valve community here. I encourage you to read and chat with people in this section- http://supportnetwork.heart.org/heart-valve-disease If I can help you with anything else, please let me know. Best, Katie
  • cahuston
    cahuston,
    Saw the surgeon today. Heart cath on Wednesday, surgery on Thursday. Does anyone have suggestions on going with a tissue valve or with a mechanical one?
  • cahuston
    cahuston,
    Well, I'm home. I thought going home would be good. I am still having trouble breathing. I can't draw a deep breath. I'm not getting stronger. Granted I've been home only a day and a half. I can see some of my reports online. I swear I was sent home with a partially collapsed lung. My mother wants me to call the home health nurse. I can't take a deep enough breathe for a deep cough. I have some nerve pain in my back and shoulder. The incision doesn't really hurt. I can't have an INR tester for 3 months from Medicare. I'm hoping one of my doctors has one to loan. I'm on 2 mg of Warfrin. My brother, who already has an artificial valve, says that is no where near enough. I need some suggestions, fast. Sam, I had almost the same thing. My arch was at 4.5.
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