Chutzpah
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Chutzpah, November 4,  2019  5:19pm EST

Tricuspid Valve Repair/Replacement ... Recovery advice??

Hi! I'm a 26 y/o female and I'm new to this group. I'm due for a tricuspid valve repair soon and my physician seems hopeful that they might be able to repair it with a minimally invasive technique. I was wondering if anyone has had experience with this and if they could talk about their recovery and if they have any pointers? (All advice welcome!)
 

Background story: 

The tricuspid valve complication is secondary to my pacemaker lead. I have had a pacemaker since I was 7 years old due to congenital heart block. That lead has been there for almost 20 years and unfortunately a rare complication can be tricuspid valve stenosis.

 

thanks in advance for your input!

10 Replies
  • MurphyDad
    MurphyDad, November 4,  2019  6:31pm EST

    Hello,

    I waited for over a year since my diagnosis of severe aortic stenosis (bi-cuspid valve) for the FDA to approve the TAVR procedure for low risk patients to replace my Aortic Valve. Procedure was Sept 18th. Went into the hospital at 7am, procedure was around 10:30 am. 6 hours later I was in my room. I was awake throughout the procedure. The next morning I walked around the halls of the hospital a few times and was discharged that evening at around 5pm. Fantastic experience. Some bruising in the groin where they gained access to place the valve. Next day home, I walked over a mile (we are regular walkers) and have been walking about 2 miles every day since. I strongly suggest that you go to Cardiac Rehab for as long as necessary. They will monitor your progress closely. I feel like a completely new person. Best of luck to you and wishing you a speedy recovery.

    Regards,

    Don

     

     

  • Chutzpah
    Chutzpah, November 4,  2019  8:54pm EST

    I'm glad to hear you had such a great experience and that you're doing well!

    the procedure they said they were going to attempt first was through my ribs instead of the sternum (trying to avoid full open heart procedure)... I hope they'll be able to do that without the full sternotomy! 
     

    how soon after your procedure did you start cardiac rehab? And how long did you wait to drive?

  • MurphyDad
    MurphyDad, November 4,  2019  9:11pm EST

    I was driving four days after the procedure. Hardly any discomfort - took Tylenol for a couple of days as needed. I had a one week follow up which went very well. At one month after the procedure I had an echocardiagram - no leaks, no problems and now I do not have to see my cardiologist for a year. My original cardio surgeon wanted to rush into the minimally invasive procedure but I insisted on waiting for the TAVR. They used an Edwards Sapien 3 valve. Procedure was at Banner Medical in Tucson, AZ. Best thing ever. 

    D

     

     

  • MurphyDad
    MurphyDad, November 4,  2019  9:12pm EST

    Started cardio rehab two weeks after procedure. 

  • Chutzpah
    Chutzpah, November 4,  2019  10:22pm EST

    Thank you! That's so great!!

    Unfortunately, as of this current moment they don't have a TAVR equivalent for the tricuspid valve :( but I hope the minimally invasive procedure will yield good results and a speedy recovery... 

    would you mind sharing what cardiac rehab looked like for you? (Duration/how many hours per week/...)

    thanks for your responses!

  • MurphyDad
    MurphyDad, November 4,  2019  10:32pm EST

    Hi,

    Cardiac rehab 3 days a week. Hooked up to heart monitor. Using treadmill, eliptical, arm cycle and stationary bike. I go Mon, Wed and Fri plus my own gym on off days and walking every day. Rehab takes about an hour and a half to 2 hours - 20-30 minutes on each device.

    D

     

     

  • MurphyDad
    MurphyDad, November 4,  2019  10:39pm EST

    My surgeon mentioned that they have used the Edward Sapien valve to replace the tricuspid valve on a rare occasion. Not sure of the details so please do your owb research. Here is an article that might be of interest.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5505401/

    Best of luck,

    Don

     

     

  • Chutzpah
    Chutzpah, November 5,  2019  12:46am EST

    Wow that sounds intense ... I might end up in the best shape of my life after I'm done with rehab :) 

    And thank you for sharing this article! I think their hope was to try to repair it instead of replacing it (I'm traveling out of state for this surgeon so I'm really hoping it works out!)... but the lead from my pacemaker being caught up in there is what complicates it even more unfortunately :/ 

  • AmbassadorC
    AmbassadorC, November 5,  2019  5:18am EST

    Welcome to the support network Chutzpah❣️ You are among a community of heart warriors that have been there and done that and we are each other's strength for the journey ahead. While my valve involved the mitral valve, I shared many of the same concerns and questions that you referenced. I would love to share my journey with you and hopefully provide some tips and tricks that will help you with your pre op  and post op recovery. I also would like to recommend the heart valve education center if you have not previously reviewed the resources. There are some wonderful downloadable PDFs that might assist you in your journey. One of my favorites is the post op milestone recovery tracker. Please see the links below and reach out with any questions you may have as we welcome you with heart ❤️

    Ambassador C
      

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