1. Community
  2. Heart Health
  3. Cardiovascular Disorders

Please help!!! TOF repair in 1986, pulmonary valve replacement?

Posted , 3 users are following.

lifesaver621
lifesaver621

Im a 30 year old male, had a TOF repair in 1986. LPA Stent at age 15. Ive been symptom free for the most part, except when I run a lot then I do get a bit of SOB. But other than that Ive been symptom free. I went into a Cardio consult, and based on my EKG and ECHO, they said I need to get a open heart surgery for my pulmonary valve replacement because I have RV hypertrophy. I thought most docs would take into consideration of symptoms, my possible weight gain (to counteract the load on my heart), and other factors before going to surgery. I literally met this cardiologist for the first time, and without even auscultating me, he suggessted open heart surgery. Not sure what to make of it. My folks who did my initial TOF repair did an ECHO every year, and the last one was done 3 years ago. MY primary care doc compared the ECHO reports and basically stated that yeh you do have Pul HTN but nothing that you havent had before and you are  not showing symptoms of anything. I am not sure what to make of it? It seems the cardiologist was hell bent on getting the surgery done, as he had everything lined up, the interventionalist (cardio), the surgeon and himself, so I feel like maybe it was a catch and bait of some sorts? Your thoughts?

0 likes, 3 replies

3 Replies

  • lifesaver621
    lifesaver621

    Posted

    Id also like to add, I am a bit overweight, as I do have sleep apnea, so Im thinking if I reduce weight, it will help with all this? 
  • Lanette1985
    Lanette1985 lifesaver621

    Posted

    Hi Im in exactly the same boat as you, and cant see why they want me to have surgery. I feel like they are low on surgeries so are scheduling a few in now that will need doing eventually. The impression i get is that they would rather do it when fit and healthy before it gets worse and they cant do anything about it. For me being a mother to a 1year old, there will never be a good time. And feel all that futuristic medicine stuff on films needs to happen right now! Im feeling the panic with u too, but im sure i will be getting more answers soon 
    • wayne04151
      wayne04151 Lanette1985

      Posted

      Hi just a bit of encouragement.  I’m 56 and had my tetralogy repaired in 1965 at University of Michigan.  I had my pulmonary valve replaced a year ago.  So I went 50 yrs. without any type of intervention.  I wouldn’t recommend it though my Surgeon and cardiologist both said I was an exception to the rule.  Surgery wasn’t that bad.  It’s scary to think about but in six weeks I was back to doing the things I love to do.  My new heart valve makes it possible for me to run and exercise without being out of breath for the first time in my life.  
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.