Connect
← Return to Aortic Stenosis & Valve Replacement
Discussion
Aortic Stenosis & Valve Replacement
Heart & Blood Health | Last Active: Feb 16 11:08am | Replies (176)Comment receiving replies
Hi everyone, im 54yo & at 39 my son gave me strep. This attacked my heart valve, that i didnt know was biscuspid from birth. Bout 1 percent of the population doesn't know they have it. I was asymptomatic least i thought i was.
I was fortunate to go to rapid city SD where Dr James Oury who ran the ROSS procedure register had just moved. He was new to the hospital. He is now passed and at year 15 i just got this horrible news from a new cardiologist as i had not sone echo's traveling during COVID to care 4 a sick father.
My surgery was 14.2 hrs the longest of its kind in record.
Now i was the largest patient at 340 pound's at the time. The aortic root was damaged w a bleb in it which he fixed and i have a human donor valve. He used my pulmonary valve there now an supposedly even tho im 173 pounds now! Feel good, thought id skate thru this echo n be done!
Cardiologist said your post ejection fracture has gone from 65 percent to 50 to 55 percent. Your ascending aorta is dilated to 52 from some 49 to 50 seven years ago.
Now 46 he said is where surgery is recommended.
I looked i was a flight paramedic an worked in OR yrs in CA. My brother also a critical care medic sent me the Cleveland clinic info saying 30 percent is poor! 40 percent moderate abd 50 to 70 is NORMAL!
So, that said he wants to do a TEE an he had an artificial valve done 3 yrs ago w a gortex root to but i dont know of any physical damage to the valve or compromise of the root. I have been dehydrated lately an stressed wsy out for several yrs from a divorce after 32 yrs.
I was given surgeons name at Mayo, i def want more feedback?
Not that i dont see him as a good credible cardiologist im sure he is. I simply woneer if because he jad 2 surgeries himself an a biscuspid valve to w his own bioprothetic valve needing to be done if i am not getting more of his personal experience an concern in his diagnosis an saying he is 90 percent positive i need a 2nd open heart surgery. Yet Cleveland clinic numbers say 50 post ejection fracture is normal acceptable numbers!
Down from 65 seven years ago idk other then i was 48yrs vs 54 now so is that turning 50+ something that has affected or justify being asymptomatic minus any physical evidence of damage? All input is appreciated I really dont want another major high risk open heart but i also dont want to ignore a truly underlying problem if hydration, sleep, modification of diet n lower stress can reduce the dilation of ascending aorta an be fine? Mt divorce is over so stress has come down drastically and needs a bit of time to probably manifest itself physiologically. Or am i rationalizing? LMK your thoughts?
Replies to "Hi everyone, im 54yo & at 39 my son gave me strep. This attacked my heart..."
There are other threads in this community on the ascending aorta dilation. I recommend having your primary physician refer you to the Mayo Clinic closest to you. I just had a TAVR for moderate-severe aortic valve stenosis January 17 at Mayo in Rochester, but the whole process started way back last September and I had to wait three weeks to get an appointment scheduled to see the Mayo cardiologist November 4th, then had to wait for the Valve Surgeons' testing and consult January 9th. I would not have wanted to be at the mercy of the local medical center where I live if my heart had taken a drastic turn before I could get it fixed at Mayo. Not that many hospitals have the talent and equipment you would want available to deal with something like that. You can google the highest rated hospitals for heart surgery to find the top four.
Connect
Well, coming from a family with a long and storied cardiac history, I would surely follow up with second and even third consults, not just accept the charts from Cleveland Clinic. Most of those charts are made for the "average Joe" and with your history, that's not you.
Here is why I am saying this - for over 25 years, I knew I had asthma, but I didn't like the way albuterol affected me, so I just ignored the symptoms and decided to live with it. At age 65 I began to get ever more serious bouts of bronchitis, pneumonia and ever-more uncontrolled asthma attacks. Three years later I was diagnosed with two serious lung infections and a chronic lung condition called Bronchiectasis - and spent 2 years very ill and on high-powered antibiotics.
I learned my lesson, right? Nope, after I finished the drugs, my bad cholesterol went way up and continued to rise no matter what diet, exercise and supplements I tried - but I knew statins were hard on me having tried one. In 2023, my new primary insisted on a statin, so I tried 2 more with bad side effects and gradually stopped them. I had ongoing chest tightness and shortness of breath and blamed it on asthma. I thought, "Aw, I'm over 70 and never had a heart attack, I'm fine." In September, a sharp NP was seeing me for Covid, did an ECG, found a heart blockage and sent me off to the ER, where they arranged a heart scan and other tests - and determined I have angina and a heart blockage. Fortunately these were caught in early stages and are being managed with medications - when they fail to be enough, there may be surgery in my future.
NOW, I have learned my lesson. Even though the new meds are causing (less severe) side effects, I will continue to use them until my cardiologist comes up with something new.
Consulting Mayo or another major center can set your mind at ease. And they may have a new strategy available that doesn't necessarily involve such invasive surgery.
If it was my heart and my life, I would make the call.
Good luck.