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REDO SEPTICAL MYECTOMY
Just wanted to tell my story if it helps out just one person. I am out of the hospital from a REDO Myectomy. Decided to spend one night at the hospital.
For anyone that has a Septical Myectomy have it done at a hospital that is a hospital of Excellence, not a hospital that just does a few as I did.
When I had mine done I had horrible health insurance that would only pay for certain hospitals and I had no choice, but to go to one that is a good hospital but not in doing Redo Myectomy.
I had redo with Mitral Valve Repair Dr has done thousands and not just double digits.
But because the first one was done with very little Mussell Removed it left me with living on oxygen, but I am alive I can work on that .
For everyone research don't settle make phone calls you deserve it ...
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Dianna @holly1275, Thank you.
Thank you for your honesty and sharing your painful story with others.
What a tragedy you have gone through.
I am so sorry.
What you have shared is something that that nobody wants to experience, and by sharing you may help somebody else who may be facing the same or similar situation.
You have one life, and as you stated, you deserve the best chance.
I like your statement "...research, don't settle make phone calls you deserve it"
I had my septal myectomy at the Mayo Clinic in Rochester, MN. The Mayo Clinic is the leading expert in HCM and performance of septal myectomyies.
There are other Centers of Excellence as well, but only a handful. By doing your own advocating you are doing yourself a favor.
Having gone through my own open heart surgery, I cannot imagine having to go through it again, and also experience the life-long complications from the first one as you are.
How long ago was your surgery?
How are you feeling now?
Have you noted any positive changes since surgery?
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1 ReactionMy surgery was last Thursday feeling pretty sore moving around .
First day home but I can walk and move around fingers crossed..
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3 Reactions@holly1275 I join Debra @karukgirl in sympathizing with you - I admire your determination to get this fixed and right so you can get on with your best life.
Yes, care for HCM at a COE is the best possible route. You emphatically emphasize that in your post (thank you). These Centers of Excellence are listed on the website of the Hypertrophic Cardiomyopathy Association website 4hcm.org, here is a link to the list: https://www.4hcm.org/center-of-excellence Not all preform septal myectomies, if one is needed, a patient is sent to a place that has surgeons with much septal myectomy experience.
There is no place like home! It has only been a week. Please keep moving - slowly - walking, too. Please also share updates on how you are doing, even compare this recovery to that of the previous experience.
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1 Reaction@holly1275
Hello! I’m glad you are up and moving it is encouraging to me, I’m scheduled for my septal myoectomy October 27 in Minnesota. Hugs don’t lift too much and try really hard to listen to your body and rest as often as needed so you don’t overdo it/messing up what you’ve gone through because there’s so much more for us! I honestly believe this to be true!!
Good Luck On Your Upcoming Surgery you are going to one of the Best Hospitals In The World.
I am up and around slowly moving never planned at having a redo Myectomy, but it happened.
Best Wishes....
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2 Reactions@dpederse69 Welcome to Connect and I am glad you are going to Minnesota for your surgery on October 27th! You will be in good hands, and I hope you will be able to reflect on the outstanding care as I do to this day.
From your post, it is clear that you have been researching and reading about the do's and don'ts as you recover. May I suggest you read the discussion topics such as https://connect.mayoclinic.org/discussion/what-i-learned-from-my-open-heart-surgery-part-1/ and https://connect.mayoclinic.org/discussion/my-septal-myectomy-decision-and-10-things-ive-learned-since/ Do remember that if you ask 100 people their stories, you will get 100 different and unique experiences.
With your doctor's OK, may I also suggest that you strengthen your leg and core muscles during the upcoming weeks? I went to the gym right up until the day before we left for Minnesota. I was a walker for decades and continued to do that during the few months before surgery when SOB was an issue. The PT/OT part of recovery after surgery begins 24 hours after and having the strongest muscles possible make that part easier.
How are your transportation and accommodations falling into place? I had 2 days of tests and interviews scheduled (Tues and Wed) just before surgery on Thursday.