u/Calliesdad20

I have a ascending aortic aneurysm
Measured 4.0 last August in ct
And 4.2 on echo last November

I’ve been doing echo every 6 months for 20 plus years from now idiopathic dilated cardiomyopathy -my ef is currently about 40.

Didn’t get diagnosed with the aneurysm until a few years ago .
I also have a icd-because of vtach

I went to a cardiac geneticist - I have a full line deletion of myosin 11- myh11 . Whuch affects the smooth muscle tissue in my body . Explains my dilation also my 2 retinal detachments.
When I did my genetics test -turns out I’m the only documented case of full lien deletion of myh11.

My genetics dr explained it’s a connective tissue issue-kind of cousin of Marfans .
I have some markers of marfans -4 out of 10.

My dr told me to get the aortic repair around 4.6-4.8 ,not tp wait till 5.5-6.
I also have a valve issue-which is moderate .
I’ve been reading the board ,ty for posting stories of aortic repair surgery ,just wanted to introduce myself.

I take meds for bp, don’t lift anything heavy ,try to reduce stress etc . Any other advice ?

9kw solar , unfortunately due to code my solar company can’t dc connect into my two Jackery 5000.

I have two 5000 and eight extra batteries .
So I have a traditional enphase ac coupled system ,with micro inverters.

Which will remain seperate from my Jackery system. I’ll produce about 12000 kw per year -eliminate most of my electric bill.

My system can run 80 hrs in the winter without solar /2 plus in the summer with mini splits .
I decided to buy a propane generator stick it in the shed and hopefully never use it -I could have dine portable panels .

The other thing I’m having done is to run a subpanel from smart transfer switch so I can do more than 12 circuits which is limiting during a long outage , Spoke to Jackery engineering-said it can be dine the subpanel can be 7200 watts.

I’ll attach pics when everything is done .
Wondering since Jackery can accept rooftop solar if anyone in less strict states have done it?

Got my icd 8 months after my zio showed rest heart rate of 174 and down ro 19 with 3 second pause.

I’m in amiodarone -100mg , now my thyroid -tsh level ,t3 and t4 are off . My endocrinologist started Mr on meds .

I wrote my ep -they said I could try going off amiodarone and to discuss with Dr next month.

Unfortunately my arrythmia is multifocal -can’t ablate it . Propfarone only lowered pvc burden from 1k percent to 8. Amiodarone I’m under 1. I tried a hospital admission solatol but my qt spiked to 528 -dangerous .

I know amiodarone is toxic -liver,thyroid,have to watch for pulmonary fibrosis.
But I’m worried about gojng off it , anyone else went thru this or thoughts ? Thanks