still searching for PVR, post VSD

[cam4est]

Hello again. I am still searching to see if anyone else has had a pulmonary valve replacement years after having a VSD repair with pulmonary banding as an infant. It is so interesting to me not to have seen any. Is it really that unique of a problem? Just wondering. BTW, I LOVE reading these threads. They have helped me immensely as I know there are so many of you out there who have recovered and live full lives. Karen

 

[Lynlw]

I'm glad you've gotten some help here. BTW I just did a search for pulmonary banding here and the only post that came up were yours Lyn

 

[gijanet]

Hi, Cam4, aka Karen!

Hi, Cam4, aka Karen!

Hello again. I am still searching to see if anyone else has had a pulmonary valve replacement years after having a VSD repair with pulmonary banding as an infant. It is so interesting to me not to have seen any. Is it really that unique of a problem? Just wondering. BTW, I LOVE reading these threads. They have helped me immensely as I know there are so many of you out there who have recovered and live full lives. Karen

I'm going to assume that you are fairly young based solely on the pulmonary banding........anyone under thirty is young in my book! Uhhh, make that 39! Anyway, back to your question. The only folks I know who have much experience with pulmonary bandings are parents of kids with CCTGV (also known as L-TGV). This is one of the surgical options to prepare kids for the double switch. Some kids with double inlet left ventricle have it performed, too.

Why did your surgeon perform the pulmonary banding? Yes, I know it was to restrict blood flow to the pulmonary artery, but why did he do it? Do you have some other congenital heart defects besides the VSD? Do you presently have a pulmonary valve? You might want to check out the adult chd group. The addy evades me at the moment, but I know it has been posted on here a few times, just recently as a matter of fact. If Lyn checks back in, I know she has it handy!

Welcome to the group and I hope you find someone to talk to. Many hugs and please keep us posted. J.

 

[cam4est]

Thanks for the response Janet. I did get a laugh out of the young comment. Actually I am in my 40's but still hope I am young! I had the banding done at UVA as an infant because at that point in time OHS and the bypass machine were still in its infancy and the docs decided to slow the flow long enough for me to grow to the point where symptoms made OHS a necessity. As a result i waited until 7yrs and then went to the NIH for the repair of the VDS and release of the pulmonary band. What interests me is that I have never heard of anyone else having their pulmonary artery and valve fail due to having this as a child. Yes, I have been on the ACHA site and come up with no others there either. Interesting. But I still have learned a lot from reading messages about many issues so it is good. I now have a porcine valve after my homograph degenerated after having only 16months. So far, so good. Thanks for the thoughts and note. Karen

 

[Emma]

Pulmonary bandings are quite common in a few chd's. My daughter had complete avsd and its the procedure thats commonly done before the big open heart to repair the defect. Its done to stop too high a blood flow damaging the lungs and heart and allow time to grow before OH surgery.
So in terms of other ops being done years after the banding... I've heard of many so you're not alone. I could put you in touch with some people in these situations if you'd like?

Emma
xxx

 

[gijanet]

Oh, wow, Karen!

Oh, wow, Karen!

You are one of our mentors. Believe me, Emma and I appreciate you chd pioneers. I'm sorry that your homograft gave out on you so fast. I know that was many years ago, but I bet that was a blow. Our surgeon wouldn't even let us consider a tissue replacement for Katie. I guess I could have really pushed the issue, but after having been on here for a year, I realized that a mechanical valve was really the only way to go for Katie.

Oh, and I screwed up. I meant DILV, not pulmonary atresia...........not enough coffee this morning or just braindead as usual. Anyway, Emma's right as she can personally attest to. I'm amazed that you didn't find someone on the adult group with a similar story. That just goes back to my statement that you are a true CHD pioneer (I refuse to use guinea pig!) and we are grateful.

I'll keep asking around as now I am curious, too. When is your surgery? Let us know so we can cheer you on and pray. Hugs. J. P.S. And, yes, 40's is young, too. heehee!

 

[Lynlw]

Janet

Janet

Oh, and I screwed up. I meant DILV, not pulmonary atresia...........not enough coffee this morning or just braindead as usual.

i think your brain probably just isn't used to posting this early lol
actually i met karen on the achd site and sent her here BTW I NOW consider under 50 young lol Lyn

 

[cam4est]

Yes, I really was a pioneer in the old days. A fun story. When I was 7 and at the NIH(dacron patching was still in the brand new phase), my roommate was from Greece. She had been flown in by Jackie Kennedy!! I always thought that was cool. Also, when I was 26 and having my first child, my ob did a nation wide search about followup after OHS in childhood as my generation was just old enough to have children. He followed me like a HAWK. I had great pregnancies and easy deliveries so they were all relieved. Well, anyway, I already had the 2nd of 2 PVR last Sept. and am doing fine. Unless you count the murmur I detected last night with my stethoscope. I didnt need to hear that!! I go to the Mayo late next month so they can check it out. I know many people have had followup surgeries since thier PB as children but my real question is, did their pulmonary arteries become severely stenotic like mine did in their adult years. There might not be many because, again, we are the first to live this long and it is uncharted ground. My cardiology group here never heard of it. Thanks to all who responded. If you are young if you are under 50, then I have a little time left!!! Karen

 

[Guest]

I am still searching to see if anyone else has had a pulmonary valve replacement years after having a VSD repair with pulmonary banding as an infant.

*raises eyebrow*

Hrrrmm....not even sure if this is the same thing as yours ... BUT....

I believe (Hrrm...will have to check with the parents to be sure) that I had a pulmonary band as an infant in 1973...since I was born without a pulmonary artery. Then, 4 years later, 1977, that band was effectively "removed" ... replaced with a pig's valve, which was then replaced in 1987 because the original pig's valve was getting to small for me. Then, 3 years ago, January 2003, I had another PVR ... because the 2nd pig's valve was (more or less) too calcified.



Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"We all do the best we can" ... Blain Larson ... 'How Do You Get That Lonely?'

 

[gijanet]

Lyn

Lyn

i think your brain probably just isn't used to posting this early lol
actually i met karen on the achd site and sent her here BTW I NOW consider under 50 young lol Lyn

Yeah, ya got that one right on both fronts. Hugs. J.

 

[gijanet]

Karen and Cort.........

Karen and Cort.........

Karen, that is cool. I am so glad that your pregnancies went well and there weren't any problems. But now I'm confused. So when did you get your first valve if the second one was just last September? I'm just curious as I find your story amazing.

Cort, sweetie, yes, check it out. Then Karen wouldn't feel so alone...........and I might have even been right in my sleep deprived post. Would a missing pulmonary artery be pulmonary atresia? Anyway, still looking forward to October. Hugs. J.

 

[cam4est]

Janet, sorry for the confusion . Here goes: I had 2 surgeries as a child: banding, and VSD repair. Then had a happy life. Then in my 40's, the artery became severely stenotic where the banding had occured. In '04 I had a pumonary artery and Vavle replacement (homograph). 16 months later the valve failed AGAIN Last Sept, I had OHS#2(actually #4 in my life) to replace the valve and also to repair the tricuspid valve(another 2 for one deal!). Sounds like if I can get 15 good years out of this old pig valve, I will happy. Cort, it would be good for you to know exactly what your CHD was. Sounds interesting. Karen

 

[Guest]

Cort, sweetie, yes, check it out. Then Karen wouldn't feel so alone...........and I might have even been right in my sleep deprived post. Would a missing pulmonary artery be pulmonary atresia?

Hmmm....not sure. Believe so, but then again, hmmm, on my med cards, I only see "Truncus Arteriosis".

Which reminds me ... can't remember why the CHD Quilt of mine shows "TR" as well.... Crap. I'll have to do some more digging through my medical information. I know I have it somewhere ... just gotta find it in this mess of life .

Aye....I know ALL ABOUT sleep-deprived posts .

Anyway, still looking forward to October.

So am I .

Holy crap do I need to get away ... and get a new job .

 

[gijanet]

Hey, Cort..........

Hey, Cort..........

Which reminds me ... can't remember why the CHD Quilt of mine shows "TR" as well.... Crap. I'll have to do some more digging through my medical information. I know I have it somewhere ... just gotta find it in this mess of life .
.

Not to hijack this thread, but Kelly and Cathy are hosting the quilt show next weekend. Shoot, you ought to go.........it's somewhere there in Illinois. Anyway, Cathy said that ALL of the quilts are supposed to be there. I told her to be sure and get pics of yours and Katie's blocks since they are right next to each other. I just couldn't remember what the quilt number was. Did you ever find out? I think it's like 34 or 35, but then again...................there's that sleep deprivation talkin'

Hugs. J.

 

[gijanet]

Yeah, aren't those 2for1 sales fun???

Yeah, aren't those 2for1 sales fun???

Last Sept, I had OHS#2(actually #4 in my life) to replace the valve and also to repair the tricuspid valve(another 2 for one deal!). Karen

NOT! Actually, we really did have two completely separate surgeries that day. After Katie had the fontan and valve repair, they sewed her up. She was about to leave the OR when her blood pressure bottomed out and they had to open her back up and replace the valve! NOT a fun day at all! Anyway, I bet our insurance company was glad it happened that way. Saved them an extra OR charge.............

Karen, I'm still fascinated by your story. I am so relieved you had so many good years between the first two surgeries and the last two. Did they speculate on why the homograft went bad so fast? You would think as an adult they wouldn't calcify in that amount of time! Did they get a good tricuspid repair? I sure hope so. Okay, any time you want to tell me to quit being nosey, you can. Hugs. J. P.S. You ought to get a quilt block made too! You definitely qualify.

 

[cam4est]

Hi Janet, I wont get tired of you asking if you dont get tired of my answers!! The homograph did not calcify, all the leaflets folded up! I never heard of that one either. The only explanation was "we dont know why". So bad luck all around. And yes, we did get a good valve repair on the tricuspid. The only thing that has me freaked out right now is that this weekend I found a murmur or some strange noise going on that wasnt there before. I go to cardio next month before going to the Mayo so will find out what it is then. Unless I get ants in my pants and have to know something sooner. It is unnerving and I am glad i can talk about it hear and people wont think I paranoid or something. I'm really not, just found the dang thing and want to know why it is there. I asked a cardiac nurse at work today adn she couldnt say. Please start another thread and tell me what is the deal with the quilt. I dont know anything about it but hope you will let me know.
Thanks for your answers. I love getting feed back. Even if I am an elder in the heart dept!! Karen

 

[Guest]

Not to hijack this thread, but Kelly and Cathy are hosting the quilt show next weekend. Shoot, you ought to go.........it's somewhere there in Illinois.

Well, sorta. It's actually just across the border into Indiana. I'm supposed to go to Delaware this coming weekend, so I won't be able to go.

Anyway, Cathy said that ALL of the quilts are supposed to be there. I told her to be sure and get pics of yours and Katie's blocks since they are right next to each other. I just couldn't remember what the quilt number was. Did you ever find out? I think it's like 34 or 35, but then again...................there's that sleep deprivation talkin'

Arg. You just HAD to ask me, didn't you? I know I was told, but I don't remember now. I do remember being told that Katie and I ARE indeed on the same quilt ... so, I'm counting on that.

 

[gijanet]

Hey, Karen.........

Hey, Karen.........

thanks for explaining. I do hope you find something out about the murmur soon. Yes, I know how maddening it can get. I'm going to cheat and post in the chdquilt addy here as opposed to starting a new thread. Hope you don't mind. Hugs. J. www.chdquilt.org
PS. It's a great organization. You should put in your block request as it takes a while. More hugs. J.