Hello...PVR Ccoming up very soon!

[dday365]

Hello everyone and good morning…. or evening depending on your location
My name is Udeze, I recently joined and have been reading the wonderful post on the forum daily and decided to introduce myself!

I am a 32 year old musician and photographer living in Los Angeles. I will be having a Pulmonary Valve Replacement on the 16th of December. I was born with a Tetralogy of Fallot and had a total repair at birth and surgery for a Pulmonary Valve stenosis in 1995. In 2010, I was told that I need a Pulmonary Valve Replacement but it was not urgent because I am asymptomatic. Fast forward to this year after having a MRI it was apparent that I needed the operation based on the results (Size of the heart) even though I am still without symptoms.

So here we are, with the surgery set for the 16th of this month.
It’s getting closer and I am trying to keep a positive mindset by reading the post on this forum, listening to music, audio books, plus playing with my cats

I have been through it before but forgot the feeling/ anxiety of waiting till the date of surgery.
After the operation like the outstanding participants on this forum I hope that I can provide strength for others going through this journey.

Thank you!
-Udeze

 

[mbeard]

Udeze,

I hope that December 16th gets here sooner rather than later. I received my diagnosis in August 2013 of a bicuspid heart valve and ascending aneurysm . I have not had a heart surgery yet, we are watching it, every 6 months. I still feel the anxiety of waiting for the time, so I can truly understand having a real "date" .

This forum has been invaluable to a "newbie".

I wish you all the good fortune that you deserve.

 

[Agian]

Welcome.

 

[Lynlw]

Hi Udeze!
My son is the one that has had heart surgeries, he is 25 now and was born with a different cHD than you, but his main repair was like many TOF so had a pulmonary conduit and valve surgeries a few times. his last surgery was when he was 19. There arent that many member here who had Pulmonary Valve replacements here since it is relatively uncommon as far as Valve surgeries go, but I thought if you haven't found it yet there is a great forum at the Adults w/ CHD orgs website http://www.achaheart.org/community/discussion-forum.aspx you also migh like to check out. I havent been there lately but there usually are a few TOF or PVR member active there.
Good luck with everything. Where are you having surgery?
Lyn

 

[mbeard]

Lynlw,

You are a strong woman/mother. As a mother, I know that did not come without effort. There is a saying, "when children bleed, parents hemorrhage."

 

[mbeard]

This is random...? What time is it there.

This is random...? What time is it there.

Welcome.

I know this is random, but it is 8:24 pm on December 7th. Standard time. What. Time is it in Australia? ..ie what is the time difference . Thanks. It might help me not post at the time people are asleep.

 

[Agian]

Right now, 1.52pm, Sunday the 8th, in Adelaide.

 

[mbeard]

Got it on the time difference!

Got it on the time difference!

Right now, 1.52pm, Sunday the 8th, in Adelaide.

There is about a 17hour time difference . Thanks.

 

[ottagal]

Wanted to add a warm welcome to this forum, Udeze. Wishing you all the best withyour upcoming surgery! We are here for you.

 

[Eva]

Udeze,

Welcome aboard and best wishes on the 16th.

 

[dday365]

Thank you everyone. I will keep you posted

 

[mbeard]

My admission that I don't know how to start a thread

My admission that I don't know how to start a thread

Right now, 1.52pm, Sunday the 8th, in Adelaide.

I apologize that I don't know how to start a thread. I. Am pretty new to the forum, but this has helped me a lot, but it has also opened my eyes to what I have not been through yet. I am 58 years old and was diagnosed in August 2013 with a bicuspid valve and ascending aneurism 4.2-4-4.5.

I just completed Robby Benson' s book. "I am not dead yet.".

It was a painful , stressful read. I couldn't put it down however, because it was a poignant lesson for me...I have had no surgery yet, so I can't get "down in the mouth" this early.

I have an appointment with another thoracic surgeon on Thursday. Second opinion, located in, my home town. I have not asked so many questions to the doctors, I am embarrassed.

Thank you all for your input.

 

[Agian]

No need to be embarrassed. We're all in the same boat.

I often leave appointments forgetting to ask something I thought was important. Write down any questions for Thursday, so you don't forget.

 

[mbeard]

I will. Thanks for that. The million dollar question for me is that I know these surgeries are so tough, as long as the pinging, thudding, and rapid heart rate I am experiencing isn't making my heart worse, I guess I can live with it.

 

[Agian]

It shouldn't make your heart worse. My heart rate was 120, when I was having my first echo. It is very unlikely that you'll go from 4.5 to rupture just because you're anxious.

 

[mbeard]

It has made me very ticked off that I can't take my heart health for granted anymore. I am sorry for this rant!

 

[aliciavicki]

Welcome to the other side Udeze! You and I have very similar histories - I hope you're doing well!