PVR Journey

[aliciavicki]

Good Morning all!

My name is Alicia, I've been reading these forums over the last few weeks and decided to introduce myself!

I am (just, yesterday in fact) 29 years old, Australian, and 4 weeks out from a Pulmonary Valve Replacement. I was a Tetralogy of Fallot baby, and had the full repair in 1989 when I was 4.5 years old. I've known that I needed a valve replacement for just under two years and so far I'm doing well (just a little tired really).

I am trying to keep a positive frame of mind, and have found writing a blog very cathartic (www.aliciavicki.wordpress.com) if anyone would like a read.

The anxiety increases the closer I get, but then so does my strength.

I hope that I can provide a little positive input, or even just someone to message for a vent. I've never really known anyone with a Congenital Heart Defect until recently - and having that person to email has made a world of difference.

So HELLO Let me know what you think of the blog!

 

[Greg~]

Welcome to VR Alicia!! I checked your blog and it's very nice. I really like your style, especially Independence - it really sum's up the experience.

Keep doing what you're doing, and I'll keep reading your blog ;-)

 

[aliciavicki]

Thanks Greg!!

 

[OldManEmu]

Welcome to VR Alicia, good to have another Aussie onboard.
The count down to surgery can be a bit challenging, however most people become relaxed with the impending surgery in the last few days prior.
I had a quick look at your blog and it’s good to see you are across the risk of endocarditis.
At least you have found a place were others can relate to your valve replacement surgery from a patients perspective.

 

[Agian]

I never thought of myself as having a congenital heart problem, until I read this. I only found out I had a bicuspid valve this year (aged 44). It suddenly dawned on me. Egads, I've had it all along. Welcome.

 

[aliciavicki]

Look at it this way: when you tell a new GP about your medical history - they do get excited, want to have a listen and generally remember you. It's very reassuring one of the little benefits of being part of this elite club.

 

[clay_from_nj]

Before my AVR, I was like a celebrity every time I went to a doctor's office or hospital: "Hey guys, come in here quick! You've just got to hear this murmur!" (Truthfully, it did sound just like my dishwasher.) Now it's like, "Yeah, so you tick. So does my cheap watch."

S'okay with me, I'll take my current condition over the previous.

 

[epstns]

Another path to celebrity:
When I used to visit my previous cardio (loved the guy but he moved out of town), since he was involved in teaching, we used to play a game called "Stump the Fellow." With my permission, he would have his newest cardiology fellow examine me, interview me, and without having the benefit of my chart, attempt to diagnose me. It was always fun, and a really sobering experience for the soon-to-be cardiologists. From their exams and interview notes they would correctly identify that I had aortic stenosis, but they would be way, way off on their estimate of its severity. Even when I was well into "severe" territory on the echo measures, I was nearly completely asymptomatic and very active and athletically inclined - especially for my age. Unless the docs carefully listened to my murmur and properly interpreted it as "very late peaking" they didn't catch the severity of the stenosis. My cardio did this "test" to show the new docs that regardless of what you see, you also have to listen and match all the data.

Of course, then there's the other path to celebrity in most cardios' waiting rooms - some of us are the youngest patients in their practice. (Well, I'm not anymore, but I was when this all started.) Most of the time the others in the waiting rooms looked at me as if to ask "Well - who are YOU waiting for?"

 

[mcsf]

I can second what Steve said. My cardiologist is at a teaching hospital and when I go for my check up they call in the fellow for a listen. I had to get stitches recently at the ER and I swear every doctor on the floor had to come over for a listen.

 

[Debbrn]

Welcome to the forum. I was also born with tetralogy of fallot. I am 48. My "repair" was done in 1972 when I was 6 years old. I have had 2 PVR with the last one being 3 years ago. I am doing pretty well. I work part-time because working full-time became increasingly difficult. Good luck with your surgery. Mine was not so bad. I had surgery on a thursday and was up walking in the halls with minimal difficulty on sunday.

Debbie

 

[aliciavicki]

Debbie that's so reassuring! The only thing I'm really worried about now is sneezing... I'm a bad hayfever sufferer - and here tis the season for sneezing. Only 3 weeks to go!

 

[Debbrn]

I have to admit that sneezing is no fun. Hopefully you will have time to prepare. Bracing with a pillow helps a lot.

Debbie

 

[epstns]

I sneezed a lot after surgery. I quickly learned that my heart pillow, a rolled up blanket or even just my crossed palms pressed against my sternum helped minimize the pain. You won't break, but it is a royal pain.