Ready to Get it Over With

[ToFMom]

I'm new to this site & am thankful for all I've learned since finding it! My son has Tetrology of Fallot & had his correction at 11 months of age. He has lead a very "normal" life with periodic heart check-ups, testing, etc. He grew up as the "kid with 2 belly buttons (chest-tube hole)" but played baseball through high school. By the time he got into college, they wouldn't let him play with his heart issues. His pediatric cardiologist has been watching his pulmonary reguritation these past few years.

He is now facing surgery for a PVR on May 4th. It will either be a porcine valve or a homograft valve. They will decide when they get in there. He's a busy kid: graduating from college, starting a new full-time job 5 wks after surgery(hopefully), closing on a house the end of June!

Since I will be the primary care-giver when he comes home, I've been researching as much as I can. So much different having an adult child going through this process as compared to a baby. Anyway, thanks for all you've shared that has made this much easier for the stressed Mom!!!

 

[Cooker]

Hi--and welcome to vr.com. I am sure all will go well, sounds like he has great life ahead!

Tom

 

[Curtsmum]

Glad you found the forum, lots of great people on here to help you through the hard times. Wishing your son the best of luck with his surgery and hope he as a very speedy recovery. Paula

 

[WayneGM]

Welcome to the VR community. Sorry for the circumstances but glad you found us. All the best to your son for his surgery and a speedy, uneventful, recovery. Keep us posted.

 

[Lynlw]

Hi, this will be short because my computer is acting up I just wrote a real long nice thing and it disapperred. Welcome, My son is 19 and has different CHDs but has problems w/ pulm valve/artery who also needs surgery soon, I'm not sure what yet but we have an appt w/ a surgeon tomorrow so will hopefully find out more. I understand how different it is when they are older and understand have fears ect. Justin had surgery may 05 and got a gortex conduit and bovine pulm valve , if you go to his page in my sig, and to the history, it is pretty good at how surgery and recovery went. where will your son be having surgery? most likely Justin will have his at CHOP since the surgeon there did his last surgery, but since this is his 5th we are also looking at other places. IF I can help w/ anything just email me I check a couple times a day.
My biggest recomnedation for home recovery is a nice comfy recliner to sleep in at night and if you have it in a family type room by a bath room, even better so friends can visit and they can stll be really comfy. and a nice throw size pillow to hug when he has to cough sneeze laugh to help the pain. Also if you have a laptop that was justin fav thing to do when he felt alittle beter in the hospital talk online to his friends, but be sure to take cords for both computer or phone jacks incase the room isn't wired for computers or wireless.
oh my son played baseball until 10th grade, he missed 11th because of surgery. Tell your son, that Justin was always pretty tired before his surgery, he didn't even realize how tired until he had his surgery and felt so much better, Lyn

 

[Lynlw]

ooops

ooops

I forgot to mention, there is also a really great forum for adults w/ CHD at http://www.achaheart.org/ many of the members also have TOF and had or are getting ready for pulm valve replacement. I don't know of your son is interested in talking to other adults that go thru alot of the same things, Justin doesn't post there, but I've learned alot from the members there. you have to register to get to the forum. they have alot of great info on the site to, Does your son go to a doctor that specializes in adults w/ CHD? Justin just went to one in nov at CHOP/UofP but also still had his ped card who has been with him since he was 1 day old, they are at different centers, but talk to each other there is a listing by state in their resource center. Lyn

 

[Mary]

Hi !
I'm glad you found our site.
Lyn has given you alot of good advice, and she's always here to offer support and her own personal perspective as a heart mom. Besides, SHE KNOWS ALOT!
I will put your son's surgery on the VR calendar.
Best wishes,
Mary

 

[Karlynn]

Welcome! I'm glad you found us. We'd love to have your son join us too. We have many young adults hanging around here.

 

[Adam 12-21-05]

Oh yah...

I remember that feeling of "JUST GET IT OVER WITH ALREADY!!!"...

I wish you and your son an easy recovery!!!

Adam

P.S. Your story sounds familiar... Do we know each other?

I'm new to this site & am thankful for all I've learned since finding it! My son has Tetrology of Fallot & had his correction at 11 months of age. He has lead a very "normal" life with periodic heart check-ups, testing, etc. He grew up as the "kid with 2 belly buttons (chest-tube hole)" but played baseball through high school. By the time he got into college, they wouldn't let him play with his heart issues. His pediatric cardiologist has been watching his pulmonary reguritation these past few years.

He is now facing surgery for a PVR on May 4th. It will either be a porcine valve or a homograft valve. They will decide when they get in there. He's a busy kid: graduating from college, starting a new full-time job 5 wks after surgery(hopefully), closing on a house the end of June!

Since I will be the primary care-giver when he comes home, I've been researching as much as I can. So much different having an adult child going through this process as compared to a baby. Anyway, thanks for all you've shared that has made this much easier for the stressed Mom!!!

 

[Phyllis]

Welcome, so glad you found us. Wishing your son the best of surgeries and recoveries.

 

[ToFMom]

My son is seeing a pediatric cardiologist still. When he turned 18 his pediatric cardiologist retired, so we thought we'd switch to an adult cardiologist. We made the appt and went; only to be referred back to a pediatric cardiologist. They said they weren't used to treating patients without "symptoms". Glad to be back with the pediatric cardiologist! He will have his PVR at Children's Hospital in Mpls. Guess they continue to treat those in their 30's.

Thanks for your well-wishes! Will look into the links suggested and keep you posted!

 

[Lynlw]

My son is seeing a pediatric cardiologist still. When he turned 18 his pediatric cardiologist retired, so we thought we'd switch to an adult cardiologist. We made the appt and went; only to be referred back to a pediatric cardiologist. They said they weren't used to treating patients without "symptoms". Glad to be back with the pediatric cardiologist! He will have his PVR at Children's Hospital in Mpls. Guess they continue to treat those in their 30's.

Thanks for your well-wishes! Will look into the links suggested and keep you posted!

I'm sorry i didn't say that right, not an "adult' cardiologist, that speciallizes in aquired heart problems, but a doc that specializes in adults that have CHDs, they usually have a ped CHD back ground but deal with all the issues that comes w/ being over 18 and having CHDs. most are affliliated w/ Children's hospitals.
Good luck and I'll keep your son in my prayers,Lyn

 

[Lynlw]

Hi !
I'm glad you found our site.
Lyn has given you alot of good advice, and she's always here to offer support and her own personal perspective as a heart mom. Besides, SHE KNOWS ALOT!
I will put your son's surgery on the VR calendar.
Best wishes,
Mary

Thank you Mary that was very nice, I needed to hear that, especially today since we are seeing a surgeon tomorrow, I'm dring my self nuts, trying to think of what he will say what I should ask ect

 

[Mary]

Thank you Mary that was very nice, I needed to hear that, especially today since we are seeing a surgeon tomorrow, I'm dring my self nuts, trying to think of what he will say what I should ask ect

Lyn,
I have Justin's appt. on my personal calendar along with my own son's appt. tomorrow,
so I remembered you were seeing the surgeon.
Maybe if you give us a rundown after Justin's appt., it will help ToFMom's.

 

[Guest]

He will have his PVR at Children's Hospital in Mpls. Guess they continue to treat those in their 30's.

*grins*

Indeed they do! My January 2003 open heart surgery was done at Chicago's Children's Memorial Hospital. I was given the choice of there or where my cardiologist is (Northwestern Memorial Hospital). But, when I learned that the surgeons' "home" was CMH, I decided that, since I'd be asleep for the festivities, I wanted the surgeons to feel at home.

Besides ... the nurses, since they deal with young kids mostly, were very attentive and talkative. And, yes, a couple of them were quite ... well ... cute . He he!



Cort:33swm."Mr Monte Carlo.Mr Road Trip".pig valve.pacemaker
PICS:lego.HO.model.MCinfo.RT.CHD = http://www.chevyasylum.com/cort
my radio show:CD SHOWCASE.7:30p central.Friday/April 27 = www.wrmn1410.com

 

[gijanet]

How wonderful!!!

How wonderful!!!

Twenty plus years without surgery!!! I so hope we can say that one day, too! I know Lyn is looking for that one, too! I know, though, that this feat doesn't make the surgery looming over your heads any easier. WE will be keeping y'all in our prayers for a successful, uncomplicated surgery and recovery. SEnding hugs..............lots of hugs. J.

 

[ToFMom]

Thank you Mary that was very nice, I needed to hear that, especially today since we are seeing a surgeon tomorrow, I'm dring my self nuts, trying to think of what he will say what I should ask ect

Good Luck with your visit with the surgeon! You will be in my prayers that all goes well! I visited Justin's website & you are all an inspiration!
I know the dread going...and holding my breath when they enter the room!

 

[Lynlw]

Good Luck with your visit with the surgeon! You will be in my prayers that all goes well! I visited Justin's website & you are all an inspiration!
I know the dread going...and holding my breath when they enter the room!

Thank you so much, actually it ended up getting postponed until May 10th, so now we can focus !00% on your son. BTW I really recomend a web page both caringbridge.org and carepages.com off them free for families going thru medical things, it made it soo much easier to give everyone updates, instead of trying to call everyone or have them calling and it was nice to read all the messages and hear how many people had us in their prayers. if YOUR SON HAS ANY QUESTIONS OR WOULD LIKE TO TALK TO jUSTIN, JUST EMAIL ME AND i'LL GIVE jUSTIN'S EMAIl oops sorry about hitting the caps or him AIM name. right now he and his dad are going to the hard rock for lunch since he was really in the mood for their ceasar salad since we were going to go there after the appt.
and of course feel free to email me if you need to vent Lyn
ps Janet we would be thrilled to make it 8 years w/out surgery, heck 5 would be nice

 

[Lynlw]

oh and I wanted to add, PLease don't think your son's next surgery won't last for a long time, most people I know get their pulm valve and life goes on nicely for many many years, Justin just always tries to be the exception. He had his BT shunt when he was 10 days old and at 17 days he had surgery for pyloric stenosis, I told him then he really needed to find new hobbies beside hospitals and surgery, but for some reason he never listens to me

 

[Debbrn]

Dear ToFMom,

Welcome.

I am 41 and also have TOF. I had my PVR with a homograft at the age of 25.
I was off work for 8 weeks because I had a busy job as a nurse. I almost felt completely back to normal by the time I started back to work. I had lifting restrictions for 3 months.

I don't know why the adult CHD doctor did not want to see him. Where are you being seen? Where is the surgery going to be?

Debbie