Update on Christopher

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cherylchapa

Well-known member
Joined
May 14, 2009
Messages
171
Location
Orange County, CA
Hi all! It's been a very busy couple of months around our house with school ending and all of Christopher's appointments. Here's the scoop on his diagnosis and treatment...

The heart cath showed that Christopher's left pulmonary artery is extremely narrowed (+/-2 mm). The pulmonary valve is leaking severly but can wait another couple of years to be replaced if we can avoid open heart surgery for the artery. The narrowing in the artery is apparently scar tissue.

Since the stress echo he had in May, Chris has been on limited activity. He sat out a lot of baseball games and is now sitting out Boy Scouts as well since his troop is training for high-adventure backpacking (which he desperately wants to do).

Our cardiologist sent Chris' records down to Rady Children's Hospital in San Diego in hopes that they would be interested in considering him for a transcatheter procedure. During the procedure, they would blow out the valve to get to the artery in order to place a stent and then they would replace the valve also transcatheter. It will be a miracle if they can do it. We go to see the doctor and have an MRI on Thursday this week.

I'm so conflicted about the whole idea. It's such a new treatment that I'm not sure about it. I'm worried that they may be using him as a guinea pig. His anatomy is so different from the straight-forward replacements they have done this way. I guess we will have to wait and see. Wish us luck!
 
cherylchapa said:
I'm so conflicted about the whole idea. It's such a new treatment that I'm not sure about it. I'm worried that they may be using him as a guinea pig. His anatomy is so different from the straight-forward replacements they have done this way. I guess we will have to wait and see. Wish us luck!
Click to expand...

Hi Cheryl. In many ways, we are all guinea pigs when we go thru this surgery. These procedures have been in a state of change since the beginning. We have a member, RCB, whose mother had to make difficult decisions like you are now making, when he was 10 years old....in 1960, when the whole idea of OHS was a very new idea. It must be very difficult for a parent during a time like this. My prayers are with your son....and you. Dick
 
cherylchapa said:
Hi all! It's been a very busy couple of months around our house with school ending and all of Christopher's appointments. Here's the scoop on his diagnosis and treatment...

The heart cath showed that Christopher's left pulmonary artery is extremely narrowed (+/-2 mm). The pulmonary valve is leaking severly but can wait another couple of years to be replaced if we can avoid open heart surgery for the artery. The narrowing in the artery is apparently scar tissue.

Since the stress echo he had in May, Chris has been on limited activity. He sat out a lot of baseball games and is now sitting out Boy Scouts as well since his troop is training for high-adventure backpacking (which he desperately wants to do).

Our cardiologist sent Chris' records down to Rady Children's Hospital in San Diego in hopes that they would be interested in considering him for a transcatheter procedure. During the procedure, they would blow out the valve to get to the artery in order to place a stent and then they would replace the valve also transcatheter. It will be a miracle if they can do it. We go to see the doctor and have an MRI on Thursday this week.

I'm so conflicted about the whole idea. It's such a new treatment that I'm not sure about it. I'm worried that they may be using him as a guinea pig. His anatomy is so different from the straight-forward replacements they have done this way. I guess we will have to wait and see. Wish us luck!
Click to expand...

Cheryl, I can only imagine your feelings. I hope the MRI provides enough information to help your decision making process. Please keep us informed about what's going on.
 
We have decided to move forward with the catheterization to place a stent in Christopher's left pulmonary artery. The reason it keeps getting scarred is because twice it has been surgically repaired and it looks good when his chest is open. But when they close up the chest and things settle into their normal places, there isn't enough room and the artery kinks like a garden hose. At this time, 85% of the bloodflow to the lungs goes to the right lung and only 15% gets through to the left. No wonder he's short of breath and has chest pain!

When they do the cath to place the stent they will also be prepared to replace the valve with a very fancy new-fangled Melody valve. The doctor says he won't know for sure if it is appropriate to replace the one he has now until he's in the cath. If it's appropriate, he will do it. If not, we wait until it is and do it then. He will still probably be able to get a Melody valve then (or whatever the newest thing is).

We are thrilled that he won't have to endure another OHS this time. We won't say never because you never know with hearts. THis doctor has convinced me that this is not an experimental treatment. He himself has done 20 of them in the short time that they have been FDA approved with good outcomes. That gives me more confidence. We don't know when it will happen yet but I will keep you all informed as soon as we have a date.

Thanks for all the prayers and well wishes!
 
Great to hear! So thankful for options,options and more options. For what's its worth it's on my heart to tell you that your a great mom.
 
I'm glad to hear Christopher will be able to have his PA opened with stents, not surgery. Justin had a section of his PA conduit replaced when he was 10. (in 98) 2 years later his also needed re opened, but by this time the stents they needed were approved so we were thrilled he was able to avoid surgery for a while with the stents. They even were able to balloon the stents open wider when his body grew, which put off needing surgery for another 5 years, until they couldn't open them any furthur. Hopefully Christopher does as well.
 
Last edited:
Thanks for the well wishes! We are still waiting for our procedure date. On pins and needles.

Julian - Thanks so much for your comment. I appreciate that!

I'll let you all know how it goes.
 
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