Hi

Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.

Lynlw

VR.org Supporter
Supporting Member
Joined
Jul 14, 2005
Messages
6,541
Location
NJ
I thought since Mary let me know about Ross and i posted in that thread, id say Hi since its been a while. Things are doing well for us.
Justin is doing well, actually better than I hoped. When he got his last bovine pulm valve and conduit in 05 when he was 17 and even needed that conduit replaced 2 years later when he was 19, his right ventricle was VERY enlarged, the pressures on the right side were even higher than his left, after both surgeries the improved, but nowhere near ave or even "good" just good for him. They improved slightly over the years. He didnt have an MRI last year but had 1 a couple months ago and we were surprised to hear not only his his valve great, but his right side was even smaller than it was 2 years ago. So I guess i wanted to share if things dont look as well as you hoped even a year after surgery, dont give up hope sometimes things slowly improve over years, even in really bad cases. Actually we were a little nervous, before the appt since Justin was a little tired and the longest he had ever gone in his life between surgeries or even interventional caths was 8 years and then he was having surgeries or stents ever couple years, so it was great hearing how well things look.
Oh I forget about it, but anyone who remebered he has one his annuerism is holding steady too. Can't ask for much beter as far as his heart health.

Beside that not much going on, which after a few tough years is just fine with me. Hopefully I do better a staying in touch with friends I made here over the years
Lyn
 
Hi Lyn, it's been a while, I've missed you around here.
Good to know that young man of yours is doing well......so nice to hear.
So can asume that you are doing well and.....keeping out of trouble? LOL
 
Glad to see your post, Lyn.
I too had been thinking and wondering about you and Justin. So glad to know that Justin is doing so well.....what a relief it must be for you!

Take care and stay in touch! :)
 
Hi Lyn!
It is so nice to see your post. Your input and most informative posts have been sorely missed. However...I am so glad that things are going well for Justin! You all deserve a break.

Take good care and hope to see you more. :)
 
How wonderful to not only hear from you, Lyn, but to hear how well Justin is doing. That is truly good news.
You've been missed. :)
 
Lyn, so glad you came back around although I'm sorry for the circumstances. I know I speak for many when I say we miss you and your never ending wisdom about so many heart related issues. I understand if this just isn't the place for you at this time, but know that we are always happy to "see" you again.

your friend,

Kim
 
So good to hear Justin is feeling good and all is going well.

Best wishes from our family to yours.
 
Thank you everyone, it's nice to feel I was missed. I'm doing ok, my back is still the same, so at least it isnt worse. I've spent the last couple days reading alot of the post since ive been here and remembered thinking how much more time I had when I first cut down so much online things. :)

Believe it or not my "baby" turned 25 last April, I still look at EVERY birthday as a gift, since so much was unknown when he was a newborn needing heart surgeries thru out his life.

One thing I wanted to mention, incase anyone ever has this problem, even tho it isnt heart related. This summer Justin went to the GI doctor because he has had alot of nausea or heartburn feeling, I thought it might be acid reflux, since i have that. Well it turned out he has "bile Reflux" http://www.mayoclinic.com/health/bile-reflux/DS00651 Bile reflux occurs when bile — a digestive liquid produced in your liver — backs up (refluxes) into your stomach and esophagus (the tube that connects your mouth and stomach)
The reason I'm mentioning it is. Justin had his first OHS at 10 days, when he got off the vent and finally could start feeding, he had awful projectile vomiting and when he was 17 days old he had Pyloric stenosis surgery (they had to widen the opening at the bottom of the stomach so foods, well milk could leave his stomach) he had no feeding problems after that.

Well it turns out even tho it isn't common, they are finding that some adults who had Pyloric surgery as a newborn can end up with Bile reflux, so since Justin has always been so lucky, he is one of them.
It's no biggie and medicine can help, altho we thought it was a little funny all the heart things he has had until this medicine, he wasnt on any long term meds not even aspirin.

Since i hadnt heard about this before, i thought Id mention it since pyloric Stenosis surgery is relatively common and someone else might be helped with this info

It is really good to see how well everyone is doing.
Lyn
 
Last edited:
Back
Top