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12-20-2012 at 2:10 PM
Usm123
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Pulmonary Vein Stenosis

Is anyone familiar with Pulmonary Vein Stenosis? We just got back from a routine cardiologist appointment and he was diagnosed with this in one vein. It is a narrowing of the vein in the heart that brings blood from the lungs. He also has BPD and is on o2. The cardiologist believes these are related. I googled and it was not my friend.

Any advice or experiences are appreciated.

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12-20-2012 at 2:58 PM
jennbent
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My DS has other heart issues related to his BPD - he's on home oxygen too.  Our's are different though - PFO and VSD.  I honestly don't even know what they stand for, but I do know they are related to his BPD.  We've been told they will fix themselves on their own, but need to be watched carefully until then.  What did the cardiologist say? Did he say it would resolve itself on its own?  

I'm sorry you're dealing with this. 

 
12-20-2012 at 3:12 PM
Usm123
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It won't resolve on its own. He will get a heart catheritization to see what exact they are dealing with. He said surgery is a likely. The dr said he looks great and is gaining weight well which is a big concern. He also said the fact that he is still on o2 is a big help to him. Google says this type of heart condition is often mistaken for BPD

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12-20-2012 at 3:29 PM
jennbent
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Crap I'm so sorry. I was really hoping you'd say the doc said it would resolve on its own. I've followed your story and you guys have been thru the wringer. My thoughts and prayers are with you. Hopefully someone will chime in with more info. Wish I could be of more help.
 
12-20-2012 at 5:25 PM
Usm123
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Everything I read said it was very rare so I figured it was a long shot. I talked to our primary nurse from the NICU and she used to work at the cardiologist office. She said she'd pick the neo's and the cardio's brain tomorrow. I thought of all these questions to ask after I left! I really thought it was going to be this minor check up, "ok see you in 6 months!"

Denial has done me pretty well during all this so I'm trying to push it out of my mind until we go back next month. With our medical histories, I wouldn't be shocked if the diagnosis changed by then. Thanks for your response, just getting it out helped!

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12-20-2012 at 6:31 PM
DrRx
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I'm sorry that you are having to go through this.  I don't have any experience with this, but I wanted to show you some support.  (((hugs)))

TTC Since July 2008.
Me: PCOS DH: Low everything (MFI)
Clomid with TI x 3 2010 BFN
Clomid+IUI+Ovidrel 2010 BFN
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9/8 Beta #1: 2082!! 9/19 Beta#2 34,689!! U/S 9/22 HR 127! 11/8 HR 150! 12/6 HR 136! 12/14 HR 139! Born at 26w2d on 2/4/2012! After 83 days in the NICU, Adalyn came home on 4/26/12  
12-21-2012 at 6:16 AM
jennbent
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Usm123:
Everything I read said it was very rare so I figured it was a long shot. I talked to our primary nurse from the NICU and she used to work at the cardiologist office. She said she'd pick the neo's and the cardio's brain tomorrow. I thought of all these questions to ask after I left! I really thought it was going to be this minor check up, "ok see you in 6 months!" Denial has done me pretty well during all this so I'm trying to push it out of my mind until we go back next month. With our medical histories, I wouldn't be shocked if the diagnosis changed by then. Thanks for your response, just getting it out helped!

I know what you mean about thinking of all of your questions AFTER you leave.  I do that all the time.  Good thing you've got your primary nurse digging for info though.  I hope it doesn't turn out to be as bad as Dr. Google has led you to believe.  My T&P's are with you!  Keep us posted. 

 
12-21-2012 at 8:23 AM
sandsandmo...
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I friend of mine just told me you posted this.

 I'm so, so sorry. My son Sam developed PVS. It wasn't a good. He had it in 2 of his veins. The only current research going on for PVS is at Children's in Boston -- and it involves chemotherapy drugs. We contacted them and tried to get my son enrolled because there were literally no other options.  Unfortunately he died one month after getting this diagnosis.

Please contact me, and I can give you more information. There have been recent successes with a treatment in Japan, using grafting.


http://fromaspeck.wordpress.com
Identical twins: Sebastien (2lb1oz at birth) and Samuel (12oz)
Samuel - 1/27/11 - 6/28/11
 
12-21-2012 at 8:28 AM
sandsandmo...
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I'm sorry I ended my post like that....depending on the severity, there are definitely options. We knew doing a heart cath was our first option, but what we were told is that it's a temporary fix and the stenosis typically returns in 6-8 weeks. With severe cases, which we were, we were looking at a lung transplant.

Our son was born at just 12 ounces. At the time of the diagnosis, he was over 7 pounds, but the doctors told us he needed to get to about 10 pounds before taking him to the cath lab. Because we were also dealing with recovery from NEC surgery, we simply never made it and his heart gave out.

The current chemo study is trying to treat the stenosis similar to chemo since it returns. And the chemo is trying to stop the return.

 Again, please PM me and I can give you more information. I believe I still have all the printed research, including the Japanese info.


http://fromaspeck.wordpress.com
Identical twins: Sebastien (2lb1oz at birth) and Samuel (12oz)
Samuel - 1/27/11 - 6/28/11
 
12-21-2012 at 9:06 AM
Usm123
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sandsandmore:
I'm sorry I ended my post like that....depending on the severity, there are definitely options. We knew doing a heart cath was our first option, but what we were told is that it's a temporary fix and the stenosis typically returns in 68 weeks. With severe cases, which we were, we were looking at a lung transplant.Our son was born at just 12 ounces. At the time of the diagnosis, he was over 7 pounds, but the doctors told us he needed to get to about 10 pounds before taking him to the cath lab. Because we were also dealing with recovery from NEC surgery, we simply never made it and his heart gave out.The current chemo study is trying to treat the stenosis similar to chemo since it returns. And the chemo is trying to stop the return. nbsp;Again, please PM me and I can give you more information. I believe I still have all the printed research, including the Japanese info.

Thank you! I'm so sorry about Sam. How old was he when he was diagnosed? I read some of the research from Boston and our Cardio told us the same thing about an angio not really helping.

Was Sam DX BPD? A lot of the research says these are often mistaken for BPD. Looking back I am seeing things that go along with this like unexplained fast breathing and unexplained borderline blood pressure.

I will PM you when I get to a computer. Thank you again for responding and any research is greatly appreciated!

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12-21-2012 at 9:23 AM
thishappyh...
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Im so sorry you are dealing with this.  Especially since it was unexpected news.  

 

I would urge you to get a second opinion.  Not because I doubt your current cardiologist, but because  I think it is always helpful to have 2, 3, or 4 sets of eyes on something that isn't "typical".   


mom to V; 25 weeker born at 1lb 7oz Lilypie Premature Baby tickers www.virginiakkent.blogspot.com  
12-22-2012 at 5:53 PM
jenmikw
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I don't post much here anymore but my friend's child has PVS.

 Her blog is here and she explains about it: http://lilysbigadventure.wordpress.com/what-is-pvs/

 She had surgery in the past and heart catherizations.  Currently she is doing amazing.

If you want I can ask her if it is okay for me to give our her e-mail to your or you could comment on her blog.

They've been through a lot with Lily and are very knowledgeable about this.

 


Lilypie Premature Baby tickers 
12-23-2012 at 9:16 AM
Usm123
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Thank you for this blog!

We are definitely getting a second opinion. The cardio sent all his scans to the heart hospital in Nola and we will set up an appt with them after the holidays. Of course this happened right before Christmas so it's a waiting game.

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