My name is Steve. I am 52 years old. I was diagnosed with HCM in my twenties. I was asymptomatic until I was 39 when I experienced an episode of Takotsubo Cardiomyopathy in the early course of my divorce from my first wife. I was prescribed a small dose beta-blockers and enjoyed the relief I felt from them. My semi-annual tests were routinely the same for over a decade, so much so that I was certain the disease had stopped progressing. I could and did walk long distances, hike, swim and bicycle as long as the inclines were not too great.
2 years ago my numbers bumped up - the measured LVO gradient increased by 20mm each year, and I've experienced increasing symptoms of s.o.b. and angina in spite of increasing medication 3 fold. I have two separate cardiologists with two separate opinions. One of them referred me to Mayo Clinic and my case was accepted by Dr. Nishimura.
Two weeks ago, I traveled to Mayo Clinic in Rochester for 3 day evaluation. My diagnosis of HOCM was confirmed and I am an "excellent candidate for septal myectomy". I found the care at Mayo Clinic, every step of the way, to be exceptional. I have had the privilege of also being served well in California at Stanford Medical Clinic and Mayo Clinic is a full class beyond. The tests were comprehensive and only applied as necessary. The attention to detail was consistent and pervasive. Empathy and positive attitudes were the norm.
I am scheduled for septal myectomy at Mayo Clinic with Dr. Crestanello on August 14th. I have compiled a list of suggestions to improve outcome. This forum has been very helpful and I want to thank those who have shared their stories.
My name is Steve. I am 52 years old. I was diagnosed with HCM in my twenties. I was asymptomatic until I was 39 when I experienced an episode of Takotsubo Cardiomyopathy in the early course of my divorce from my first wife. I was prescribed a small dose beta-blockers and enjoyed the relief I felt from them. My semi-annual tests were routinely the same for over a decade, so much so that I was certain the disease had stopped progressing. I could and did walk long distances, hike, swim and bicycle as long as the inclines were not too great.
2 years ago my numbers bumped up - the measured LVO gradient increased by 20mm each year, and I've experienced increasing symptoms of s.o.b. and angina in spite of increasing medication 3 fold. I have two separate cardiologists with two separate opinions. One of them referred me to Mayo Clinic and my case was accepted by Dr. Nishimura.
Two weeks ago, I traveled to Mayo Clinic in Rochester for 3 day evaluation. My diagnosis of HOCM was confirmed and I am an "excellent candidate for septal myectomy". I found the care at Mayo Clinic, every step of the way, to be exceptional. I have had the privilege of also being served well in California at Stanford Medical Clinic and Mayo Clinic is a full class beyond. The tests were comprehensive and only applied as necessary. The attention to detail was consistent and pervasive. Empathy and positive attitudes were the norm.
I am scheduled for septal myectomy at Mayo Clinic with Dr. Crestanello on August 14th. I have compiled a list of suggestions to improve outcome. This forum has been very helpful and I want to thank those who have shared their stories.
Your symptoms etc sound like my husband, he was diagnosed at 43 and led an active life on a small dose of atenolol, in 2017 managed a gorilla trekking trip in Rwanda at 8000 ft. Last March had a complete heart block needed a pacemaker/ defibrillator and went down hill over the next few months although was still hiking etc walking 4 miles most days but started having symptoms which took him to Mayo where he had a septal myectomy in October 4. He made an amazing recovery and is back to normal 😊
Best wishes to you for your surgery and recovery. Mayo is the best, also a little biased cos our daughter is a nurse at Mayo in Jacksonville.
I just had surgery; was released Wed and had a follow up today. From day one everyone said how great I was doing and my only concern is the swollen bulge at the top of the incision. I also didn't expect the top of the incision to be so high up but was told today the bulge WILL go away. I've used nothing but Tylenol since day 5. I was released day 7 only because of low blood pressure. I wish everyone could have the good recovery start I've had and sure hope it stays that way.
Your symptoms etc sound like my husband, he was diagnosed at 43 and led an active life on a small dose of atenolol, in 2017 managed a gorilla trekking trip in Rwanda at 8000 ft. Last March had a complete heart block needed a pacemaker/ defibrillator and went down hill over the next few months although was still hiking etc walking 4 miles most days but started having symptoms which took him to Mayo where he had a septal myectomy in October 4. He made an amazing recovery and is back to normal 😊
Best wishes to you for your surgery and recovery. Mayo is the best, also a little biased cos our daughter is a nurse at Mayo in Jacksonville.
Thank you! I think you are right about Mayo being the best. From the first arrangements to this pre-operative phase I have had nothing but positive experiences.
This is a question that may sound silly. My husband had HOCM and five blockages last year. Saturday August 3rd is his one year anniversary after surgery. He wants or celebrate by going on a short zip line , is it’s safe?
Also a note to those going thru this now, it’s amazing the difference a year makes. Can not say enough about Mayo Clinic and the staff. They are the Bentley of hospitals.
My name is Steve. I am 52 years old. I was diagnosed with HCM in my twenties. I was asymptomatic until I was 39 when I experienced an episode of Takotsubo Cardiomyopathy in the early course of my divorce from my first wife. I was prescribed a small dose beta-blockers and enjoyed the relief I felt from them. My semi-annual tests were routinely the same for over a decade, so much so that I was certain the disease had stopped progressing. I could and did walk long distances, hike, swim and bicycle as long as the inclines were not too great.
2 years ago my numbers bumped up - the measured LVO gradient increased by 20mm each year, and I've experienced increasing symptoms of s.o.b. and angina in spite of increasing medication 3 fold. I have two separate cardiologists with two separate opinions. One of them referred me to Mayo Clinic and my case was accepted by Dr. Nishimura.
Two weeks ago, I traveled to Mayo Clinic in Rochester for 3 day evaluation. My diagnosis of HOCM was confirmed and I am an "excellent candidate for septal myectomy". I found the care at Mayo Clinic, every step of the way, to be exceptional. I have had the privilege of also being served well in California at Stanford Medical Clinic and Mayo Clinic is a full class beyond. The tests were comprehensive and only applied as necessary. The attention to detail was consistent and pervasive. Empathy and positive attitudes were the norm.
I am scheduled for septal myectomy at Mayo Clinic with Dr. Crestanello on August 14th. I have compiled a list of suggestions to improve outcome. This forum has been very helpful and I want to thank those who have shared their stories.
I had an Extended Septal Myectomy and excision of Papillary muscle. Was SUPPOSE to start Rehab within 2 weeks but could not get in until 7 weeks. Now I'm finding the Rehab Center can't get a clear answer on if Medicare will cover it. Has anyone had this and have any issues with Medicare? I did leave a message to see my heart dr can get anything going but I don't think I'll hold my breath.
I flew home to Los Angeles about 8 days after my surgery. I was discharged from the hospital after only 4 days but I elected to stay in a hotel in Rochester for a few days before I flew home just to be sure all was stable.
I had my surgery October 1st. I purchased a recliner which really helped to sleep in. I also had a lot of clean washcloths for my shower including a shower chair. Other than that it takes time. I am still recovering.
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Hello, Everyone!
My name is Steve. I am 52 years old. I was diagnosed with HCM in my twenties. I was asymptomatic until I was 39 when I experienced an episode of Takotsubo Cardiomyopathy in the early course of my divorce from my first wife. I was prescribed a small dose beta-blockers and enjoyed the relief I felt from them. My semi-annual tests were routinely the same for over a decade, so much so that I was certain the disease had stopped progressing. I could and did walk long distances, hike, swim and bicycle as long as the inclines were not too great.
2 years ago my numbers bumped up - the measured LVO gradient increased by 20mm each year, and I've experienced increasing symptoms of s.o.b. and angina in spite of increasing medication 3 fold. I have two separate cardiologists with two separate opinions. One of them referred me to Mayo Clinic and my case was accepted by Dr. Nishimura.
Two weeks ago, I traveled to Mayo Clinic in Rochester for 3 day evaluation. My diagnosis of HOCM was confirmed and I am an "excellent candidate for septal myectomy". I found the care at Mayo Clinic, every step of the way, to be exceptional. I have had the privilege of also being served well in California at Stanford Medical Clinic and Mayo Clinic is a full class beyond. The tests were comprehensive and only applied as necessary. The attention to detail was consistent and pervasive. Empathy and positive attitudes were the norm.
I am scheduled for septal myectomy at Mayo Clinic with Dr. Crestanello on August 14th. I have compiled a list of suggestions to improve outcome. This forum has been very helpful and I want to thank those who have shared their stories.
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1 ReactionYour symptoms etc sound like my husband, he was diagnosed at 43 and led an active life on a small dose of atenolol, in 2017 managed a gorilla trekking trip in Rwanda at 8000 ft. Last March had a complete heart block needed a pacemaker/ defibrillator and went down hill over the next few months although was still hiking etc walking 4 miles most days but started having symptoms which took him to Mayo where he had a septal myectomy in October 4. He made an amazing recovery and is back to normal 😊
Best wishes to you for your surgery and recovery. Mayo is the best, also a little biased cos our daughter is a nurse at Mayo in Jacksonville.
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1 ReactionI just had surgery; was released Wed and had a follow up today. From day one everyone said how great I was doing and my only concern is the swollen bulge at the top of the incision. I also didn't expect the top of the incision to be so high up but was told today the bulge WILL go away. I've used nothing but Tylenol since day 5. I was released day 7 only because of low blood pressure. I wish everyone could have the good recovery start I've had and sure hope it stays that way.
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Helpful -
Hug
1 ReactionThank you! I think you are right about Mayo being the best. From the first arrangements to this pre-operative phase I have had nothing but positive experiences.
This is a question that may sound silly. My husband had HOCM and five blockages last year. Saturday August 3rd is his one year anniversary after surgery. He wants or celebrate by going on a short zip line , is it’s safe?
Also a note to those going thru this now, it’s amazing the difference a year makes. Can not say enough about Mayo Clinic and the staff. They are the Bentley of hospitals.
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1 ReactionHi @shatro,
I hope the surgery went well; are you able to share a few details about the septal myectomy? I look forward to hearing from you.
I had an Extended Septal Myectomy and excision of Papillary muscle. Was SUPPOSE to start Rehab within 2 weeks but could not get in until 7 weeks. Now I'm finding the Rehab Center can't get a clear answer on if Medicare will cover it. Has anyone had this and have any issues with Medicare? I did leave a message to see my heart dr can get anything going but I don't think I'll hold my breath.
That is helpful', since I too am from CA.. Should I have someone stay with me after surgery to go back to CA.? (So Cal.)
Jumping on here..... my surgery is December 5th. We live in the country and wanted to know what I should have in the house for rehabilitation.
I had my surgery October 1st. I purchased a recliner which really helped to sleep in. I also had a lot of clean washcloths for my shower including a shower chair. Other than that it takes time. I am still recovering.
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