Pulmonary valve regergitation

[Simontaylormills]

Is anyone on here suffering from pulmonary valve regergitation?

Not aortic valve but pulmonary

Thanks.

[Midgeymoo17]

I did have severe Pulmonary Regurgitation for 5-8 years. Had valve replacement in July 2017.

[Simontaylormills in reply to Midgeymoo17]

Hi, I'm on the priority list for the operation and wondered how you felt going going into it.

Personally I have a deep seated fear about not waking up after!

How did you feel??

[Midgeymoo17 in reply to Simontaylormills]

The way I felt roller coaster.

Mostly I felt somewhat excited sometimes. Four years before I had been an athlete a national talent programme. My funding was withdrew due to not keeping pace with my team mates progress. To an extent this was exciting because it was the next chapter in my life after that horror. We had also played the watch and wait game of 15 years after doctors first told my parents would need replacing so it kind of was a milestone that just felt forever coming. This feeling was so justified.

Other times, and this is hard to admit, I wished that I would not wake up. In addition to my Fallot Tetralogy, I have a whole host of other congenital conditions that to be honest are far worse. Doctors can do no more for them but the care go them is so involved that I am just tired and sick of them. I hate the prospect of another 60 years unable to go to the toilet at all. My number one wish for christmas has always been to be able to go to the toilet just once without the paraphernalia.

I never really had a fear of not waking up. Firstly for he above, it would have taken away a significant pain and discomfort that I face. Also, I am significantly younger than you and have no commitments to any dependents. I was 20 so had my parents and brother. The report from my mum, was she was scared of me not waking up until I got to the anaesthetic room. But beyond that the fear went as one knew without PVR death is a certainty and its a horrible slow death. That dying on the table is a painless situation.

[andrew4322]

Yep, I do. Because I was born with Fallot’s. Waiting for a replacement sometime this year hopefully.