Really needed to hear this. The anxiety caused by a complication after a surgery is extremely hard to manage. Praying to go back to normal and take as much time as needed. Patience is key.

@TheMarfanFoundation

14 күн бұрын

We're with you

I had a large tumor removed from my abdomen in March. The depression has manifested itself in my physical body as well as the targeted chemo pill screwing with my nerves. Im in constant fear. This is not the life I had hoped for.

I had this surgery...I still wished I'd died. You will NEVER be the same. 60% of the things I loved to do...I can't anymore. It's even hard to exercise because you can't lift weights and heart strain is a no no. I'm 59 and feel like I'm a dead man walking. Take care of your blood pressure. This disease was in my family but no decided to tell me until I was wheeled into surgery! And the pain was so bad they strapped me to my bed! I ripped out my IV and heart monitors so I could jump out a window from the pain! It's like your burning from the inside out! And the pain is so intense, but you don't pass out!

My right ovary turned around itself and they removed it two weeks ago, I feel so awful. I feel like I shouldn't have survived it.

i’m really depressed after surgery i think it’s the inflammation

Dacron Ascending Aorta Stent Graft: I have been suffering with an intense knocking with each heartbeat since my BAV valve and dacron ascending aorta graft replacement in April 2016. I have tried several times to plead with the doctors that I have an issue and they deny I'm feeling anything other than a normal heartbeat (because they can't feel what I'm feeling). I have not been able to get one full nights sleep in the last year having to use melatonin to try and doze off, but wake up in the middle of the night several times. It's exhausting with the knocking I feel. I have seen another video that they may not have even needed to replace the aorta with a dacron graft as my aorta was only 4.3-4.5 cm (less that the 5-6 cm size determined to warrant surgery). It was not dissected, only larger than normal. Yesterday I discovered I could actually record the knocking heart sounds with my cell phone and may do a separate post. I'm hoping someone can provide answers to the knocking on the recording as I believe the dacron graft is slamming against my breastbone with each beat. They have done the usual echo-cardiogram but say everything is normal, that what I'm feeling is normal. The nurse practitioner assistant to the primary cardiologist is rude saying I think I'm smarter than her because I said she cannot feel what I'm feeling and does not want to listen to me (she actually shook her finger in my face saying she's done listening to me). It's hard to believe the battles I've been fighting especially that the surgery went 11 hours and they could not get my heart to beat right or coagulate properly. I believe it's the dacron aorta flopping against my body because there's too much slop in there. Trying to sleep it's like a shutter slamming in the wind all night long but is inside my body. I don't know what to do.

@tariqalodat720

6 ай бұрын

Did you find any solution to your problem? Hoping you have. Surgery for 11 hours is crazy. Be strong.