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29 y/o to get a valve replacement

  • 1.  29 y/o to get a valve replacement

    Posted 03-26-2019 02:12
    Hello everyone!

    I am glad I have stumbled upon this forum.  I am looking for help and advice.

    I had a bicuspid aortic valve that was repaired when I was 15 years old.  They opened me up and repaired the valve with the pericardium.  It has lasted me this long but now my Dr is telling me its time to replace the aortic valve due to it leaking again.

    I am a very active person and plan to do a lot of traveling to more remote parts of the planet and I am trying to make the right decision.  I do not like the blood thinner and the mechanical valve option, but I also would prefer not to undergo open heart surgery every 15 years.  I am excited for the TAVR to advance but it seems as though neither bio-prosthetic nor the mechanical valve has progressed much in the last 15 years since my first surgery.

    I was hopeful that by now there would be a better option and I am still hopeful for the future.   I am now tasked with making the decision on what replacement valve to use.

    Anyone?

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    Tyler Lynn
    Ivins UT
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  • 2.  RE: 29 y/o to get a valve replacement

    Posted 04-03-2019 08:05
    I was 28 when I had my first aortic valve done. I went with the pig valve with the hope's of no blood thinners. That didnt happen. I ended up on coumadin anyways. This past August, I had a Edward's TAVR valve put in and was placed on eliquis. No more opening my chest to replace valves was the selling point, so to speak, for me and no weekly inr check was just a bonus.  Yes, the mechanical means no more surgeries for many years but theres coumadin, tissue valve is no coumadin but 15 yrs is average life span of valve, tavr is 10yrs but no sternum cutting... it's all in what you are willing to deal with. All have pros and all have cons.

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    Charles Capien
    Capien Retail Installations LLC
    Prior Lake MN
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  • 3.  RE: 29 y/o to get a valve replacement

    Posted 04-04-2019 10:26
    From what I understand, TAVR has a limited use in young people since the "life" of these valves depends on your activity level.  Each "valve in valve" replacement reduces the opening size at the aorta and would have to be replaced surgically at some point anyway.

    I've had my mechanical aortic valve since I was 31, now 83.  Blood thinners are a nuisance but with home testing no bigger issue than diabetic "finger sticks".

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    Richard Feusner
    Louisville KY
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  • 4.  RE: 29 y/o to get a valve replacement

    Posted 04-07-2019 08:15
    Hi Tyler!

    I'm g;ad you stumbled upon this forum too.  I didn't have a valve replacement yet, but it's likely in the future as my repair as a child left me with a leaky pulmonary valve.  I'm just chiming in to inquire if you are being followed by an adult congenital cardiologist.  It sounds like your difficulties stem from a congenital heart defect if you needed valve repair at the age of 15.    I was born with a heart defect, Tetralogy of Fallot and have been advised to stay with Children's Hospital or another Congenital Heart Clinic.  They know our issues and what to look for and what advice to offer better than typical adult cardiologists.  I'm 51 now and have gone to Pittsburgh Children's Hospital since birth and I guess I will continue forever!   Not sure where you are in Utah, but I believe the University of Utah has a Congenital Heart Clinic.

    I will pray for wisdom to receive the best care and about which valve to select.  Prayers too for you to be able to keep up your active lifestyle!  It can be a challenge but we are encouraged to keep exercising our heart pump!

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    Tina Marshall
    Cranberry Twp PA
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  • 5.  RE: 29 y/o to get a valve replacement

    Posted 04-08-2019 09:15

    Hey Tyler,
    My name is Ken Levine
          I can speak of some experience about open heart surgery. I have had three open hearts when I was a young lad, surgeries were in 1968, 1972, and 1976. I am now 62.
    The long and the short of it is that in 1976 I had a prosthetic aortic valve implanted. It did mean taking coumadin, and I will tell you  that part is a PIA,
          HOWEVER, I just had an echocardiogram (sp) and my cardiologist told me it is looking great......after 42 years! I have a Bjork-Shiley valve, and in 1976, very few surgeons had the training to perform the procedure.
    And how far we have come in 40, 50 years.
          I know you know how having your sternum opened up is hard, and I remember all three times it was done, (in those days I swear it was with a Sears saws-all!) but still being very healthy, biking and walking all over town in Vermont, it is good to know I am still good to go.

         These decisions are yours to make my young friend. I am hopefully responding to your request for info, and not only am I glad you joined Mended
    Hearts (the compassion is healing) I recommend you talk to your cardiologist which you have been doing.
        

    Ken Levine



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    ken levine
    volunteer, retired
    802-236-8186
    kenpaullevine@gmail.com
    Middlebury, Vermont
    05753
    United States of America
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