Pulmonic Valve Replacement Scheduled

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R

rlmknh

Member
Joined
Dec 27, 2009
Messages
6
Location
Virginia
Hello all. So after all of my life knowing I had congenital pulmonary stenosis and had surgery at 14 months to repair it, I never was told I would eventually need a valve replacement. 2009 was a full year! I found out I was pregnant, had my first echo since I was like 15, had my first MRI and then was told I needed my pulmonic valve replaced in the next 1-2 months. Oh, and my daughter was just diagnosed with the same heart defect as me, luckily hers is minor. So, Merry Christmas & Happy New Year to me!

I am pretty nervous about the surgery. The pain, needles, tubes, having my heart & lungs ran by a machine, it all is scary. I am more nervous about my family & not being able to take care of my daughter for 4 weeks. I wont even be at home for 5-7 days! I know her daddy will do great, but she just needs her mother. It's also going to be hard on my parents & my hubby. I'm sure I will look back on this someday and realize I am worrying for nothing. We all just have to keep our heads up and only look forward in life at times. We do it and we get by just fine. It's always the leading up to it that is more stressful. I just want to get it over with. My daughter will be a little over 5 months when I have my surgery, on 1/15/2010. So I want to be recovered and ready to run after her as she crawls and walks away from me! The Doctors say how better I will feel afterwards (once recovered) and I am looking forward to that day!
 
Hi, and welcome. I'm so sorry you're going through all this, but I'm sure you'll feel so much better when it's over. Your daughter will do just fine - truth be told, she won't remember your absence. You're lucky at this point in that you don't have too much longer to wait. Be sure to read the "stickies" at the top of some of the forums - great info from the experienced! Don't be shy about asking any question that comes to mind and feel free to vent. Sometimes it's easier to talk out your fears and frustrations with folks who have 'been there, done that'.
 
Hello and welcome. I am a tetralogy of fallot patient that includes pulmonary stenosis. I will be having another PVR next may. I am also nervous. Last time I did not find it that painful or that bad. Now that I am 44, I am hoping that it won't be that much worse.

Debbie
 
I am with you on this. It is not the stuff that I would never have control of like the pain and the actual surgical stuff that bothers me as much as knowing I will miss out on the parts of life I normally am there for. Being present but, not able to preform. The best part is that this is temporary and the results it will yield are great for your baby and your family. They will get the gift of an alive vibrant healthy you. Can you give them any better gift?
 
Thank you all for you posts. It definitely helps to vent and hear everyones comments and suggestions. My first surgery of course I don't remember. Although my mom tells me that I was very brave and would actually walk around visiting the other babies in the hospital. It's just amazing the things I've had to overcome at such a young age. Yes, I do agree that the best gift I can give my family is to be here with them and to take care of them even better than before!
 
The wait is the worst part...

The wait is the worst part...

Welcome to a great place to learn, vent, inquire... there are many people here that can help. Almost everyone will tell you that the waiting seems to be one of the worst times. Good luck and best wishes for great success.
 
Hi, Welcome, I'm sorry This all came as such a surprise to you. I know alot of the older "heart babies" fell thru the cracks because they and some of the doctors didn't know they would probably need more surgery/surgeries in the future. It's good one of your doctors had you get your echo and MRI, before things got too bad. My son is 21 and like Debbiw was born with one of the CHDs that pulmonary stenosis is a part of so has had several heart surgeries. Where will you be having your surgery? Another group you might be interested in is the Adults with CHD org, they have a forum and I haven't checked it for a while, but they use to have quite a few members around your age, or that need/needed Pum valve replacements ect.

Hopefully your daughter's PS stays minor for many many years.
oops here is the link to the Adults with CHD site http://www.achaheart.org/
 
Welcome to this great forum and very sorry for the circumstances. You will get alot of support here and feel free to vent away. All the very best to you!
 
Hi there - wow - what a huge year for you!!

I'm another heart baby who grew up being told I would never need another surgery, so I can totally relate to the shock of finding out they were wrong! I'm very glad to say, however, that a little over a year after my PVR I am doing fantastically and feel better than I have in years.

It sounds like you have a great support team waiting to help you through the next few months. It's no picnic... but it's not nearly as awful as most of us imagine it will be... and I'm sure your hubby, with the help of your parents, will do just fine. You are absolutely right in thinking the anticipation is the worst part!

Use this time to get things as organised as you can to make your recovery as stress-free as possible.

Good luck!


A : )
 
"I am pretty nervous about the surgery. The pain, needles, tubes, having my heart & lungs ran by a machine, it all is scary.."​

Hey, if you werent scared, you wouldn't be normal ! Seriously, the waiting is the worst part, especially if, like me, you don't think you are experiencing symptoms. You will feel much better after it is done. And, in reality, the alternative is not to be here at all, for anything.

Pain is well managed these days. I was home in 6 days, and the only "pain" med I took once home was Tylenol.

You said you don't remember your surgery when you were younger, so just think, your daughter won't remember your absence. I am sure your DH and your parents and in-laws and whoever else is helping will look after her marvelously. Even leaving this for a year or two, you would just be facing another set of problems - when do I tell her, what do I tell her, how will I keep her from wanting to sit/jump on me etc.
 
Just wanting to wish you the very best with your upcoming surgery!

I think we can all relate to the fear & anxiety that you are experiencing right now. As the saying goes, "been there, done that!"

We're all here to help you though this hurdle & will be waiting to hear from you when you make it to the other side of the mountain.

Godspeed!
 
Ouch--that is tough timing. And it is a hard thing to get your mind adjusted to. Reading here should help, and be sure to ask anything you're concerned about.

Which hospital will you be using? There are other Virginians on the forum--like me:)

Welcome to the forum!
 
Thank you all. It definitely helps hearing everyones stories and comments. It's nice to know I am not alone! I don't realize how stressed I am until I have crazy dreams about it. I know the last days leading up to it will be hard. It's like when I was pregnant and knew I would probably need a c-section. I was totally calm about the entire thing, until the Doctor said, see you tomorrow at 8 am for your c-section, then I was scared and couldn't sleep at all that night.

You are very right Jeanette, I am glad she is still too young to remember. I couldn't imagine her being like 2 and not understanding why mom is not home or why mom is hooked up to all of these machines. Why can't mom play with me and hold me..yikes! I think it is happening at a good time. She has just learned to turn over and I want to be here when she makes her first attempt to crawl!

I do have a wonderful support team and am lucky to have my family close by to help. My friends and co-workers have also offered anything I may need. I do feel very lucky.

My surgery will be at UVA by Dr. Gangemi.
 
Hello,

I'm a fellow Virginian and just wanted to extend my best wishes for your upcoming PVR. My child was born with severe PS and has been through a couple of replacements. The waiting is absolutely the worst IMO. Hopefully all will go smoothly and you'll have your baby back in your arms in short order.

Again best wishes!
 
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