Newbie Facing PVR

[pfsinger]

Hi!
I just registered on this site and I can't remember who on the ACHA message boards told me about this site. (Sorry!)

I was born with ToF. I had a Blalock-Tausig Shunt when I was 15 months old in 1974 and had OHS in June of 1978 when I was 4 1/2. I've had no complications and have lived an uneventful life (where my heart is concerned). I thought I was "fixed."
I just found out (after seeing a cardiologist for the 1st time in over 11 years) that my pulmonary valve is barely functioning and that I need to have it replaced within the next 6 months. I am aiming for July.
My doctor is the clinic director of the Mayo Adult Congenital Heart Disease Clinic - Dr. Carole Warnes - and I trust her. I am fortunate.
I am also freaking out a little bit about this. Not as much as last week, but I'm still worried about the PVR and all it entails.

This site seems like a natural place in which to talk about this. Any advice you can offer about preparing for the OHS, the hospital stay, and recovering from a PVR will be greatly appreciated.

Thank you!
Pamela

 

[Ross]

Hi Pamela and welcome to the forums.

Best thing to do is sit back, relax a bit and start reading threads that sound like they may interest you. Once you've done that, they ask away at questions. Makes things a little easier on everyone.

Your in the right place, others will be along to help too, so enjoy and participate long after it's all over with.

 

[geebee]

Pamela,

I just wanted to welcome you to our second home. I honestly don't know anything at all about pulmonary valves and am ashamed to say I don't even know what they do.

However, I am sure valve replacement of any kind entails the same type of surgery so I can answer questions about surgery.

I am sure you will find the answers you seek and all the support in the world.

 

[carista]

Welcome Pamela from another Minnesotan!

Will you be having your surgery at Mayo then? I just had surgery there last December with Dr. Sundt to have my aortic valve replaced. I'm also going there later this month to see Dr. Ammash whom I've never met before, ever heard of him?

Anyway just wanted to say welcome, you will find out a lot of information on this site!

Carista

 

[Perry]

Hey Pamela,

You have gotten good advice so far. Check out some threads, chat, private message anyone you might want to talk with.

I had surgery about 4 weeks ago. One thing I would advise that I don't see recommended too often - ear plugs!. Sleeplesness after surgery, at the hospital and at home, seems to be the rule. But the noise at the hospital can be very frustrating. Get foam rubber ear plugs from the drug store and you may have a chance of better nights at the hospital.

 

[Diane]

Hi Pamela,

I have TOF also and I am also a member of both boards. You will find a lot of helpful information and support here.

My story is basically the same story as yours. I "corrective" surgery at 22 months old. That was followed by a heart cath to make sure everything was OK when I was 5 years old. At that point, I was pronounced "fixed" and told to go out and live my life. I had no further complications or symptoms. I also stopped seeing the cardiologist. Other than a couple of consultation visits, I had not seen a cardiologist in almost 30 years. Then in June 2004, I had an echo that revealed increasing pressures in the right side of my heart. After much to-do, I wound up in the ACHD clinic at the Stanford University Hospital. That was when I learned that I was "repaired" but not "fixed" or cured". It turned out that the particular "repair" procedure that was used on me left me with no pulmonary valve at all. I had moderately severe pulmonary regurgitation. It was recommended that I have surgery to replace the valve so I had my PVR in February of last year.

Like you, I was shocked and totally freaked out about having OHS. As Geebee said, I think the procedure is pretty much the same no matter which valve you are replacing. The only difference with us is that we require surgeons and anesthesiologists that are used to operating on CHD's. Both my surgeon and my anesthesiologist are pediatric doctors that also specialize in adults with CHD.

I found a lot of good information, advice, and support on this site. The Pre-Surgery threads are great.....they address everything from what to take to the hospital to where they shave you! I found the Post-Surgery threads to be very comforting because I got to read about someone else's success story almost every day. They would make me think "if they can do it, then can I too!" Those threads also discuss all aspects of the recovery process and the future which helps to keep you positive.

Let me know if you have any questions that I can help you with.

Take Care,
Diane

 

[George]

Welcome from yet another TOF patient

Welcome from yet another TOF patient

Welcome Pamela!

As you can see by reading my signature, we both are TOF patients. My pulmonary valve was essentially removed when I had my "repair" in 1965. I did assume that I was "fixed", like you. About 3 years ago my cardiologist began to suggest that I should have a PVR at some point. Last year, we decided the time had come. All of us here can relate to your being "freaked out" & worrying about the surgery. You just have to remember how much your heart will benefit from having that valve! You have come to the right place, Pamela. You will get lots of good advice & support here. I know I have. I wish you all the best!

George

 

[Guest]

PAMELA!!!!!

Welcome to VR .

That might've been me that mentioned vr.com to you ... but, I'm not sure .

Anyway ... glad you are here now, too!!!!



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
"Welcome me to stay overnight" ... Ingrim Hill ... 'Will I Ever Make It Home?'

 

[Tiffin]

Hi and welcome to the greatest site!

I didnt get to freak out over my surgery, went to the ER thinking I had a really bad flu and couldn't breathe, was admitted with congestive heart failure, two days later after testing told Mitral Valve shot to heck and needed OHS and that was done 4 days later. The rest is history! I got a stay of 16 days and got the works!

Read all the wonderful information here and ask lots of question. I have found just about everyone here very knowledgable about different things! It sure help me after I got home!

 

[pfsinger]

Wow - A LOT of responses. Thank you all so much!
It's so great to know that there are so many of us out there and that we have found ways to connect with each other. What a wonder thing the Internet is.

Ross- thanks for the welcome. I'll definately be checking through older posts.

Geebee- I honestly didn't know what exactly the pulmonary valve did (I knew it was important!) until I saw my cardiologist. I'll probably take you up on your offer to talk about surgery.

Carista- Yep- I'm at Mayo. My surgeon will be Dr. Dearani. I haven't heard of Dr. Ammash, but I've ony been to Mayo once so far. We are very fortunate to live so close to one of the best medical facilities in the world.

Perry- Thanks for the tip on the ear plugs. I'll add them to my to take to the hospital list.

Diane - our story is not uncommon, unfortuantely. But at least we went with our instincts and got checked out.

George- Another ToFer! I am finding that we are everywhere...Thanks for the welcome and kind words!

Knightfan- Hey, I know you! And it might have been you who recommended this board. If it was, thank you!

Tiffin- wow! What a story! I'm glad that you are doing well!

Thank you all for the wonderful welcome and advice! I'm sure I'll be getting to know all of you.

Pamela

 

[Mary]

Hi Pamela, and welcome!
I went to college in Winona, MN, and made alot of friends in the "Cities".
You are fortunate to be so close to Mayo; I know you will do well.
Take care and hope to see you posting any questions you may have.
Mary

 

[Guest]

*chuckles*

Thought ya might remember me, Pamela . And, if I was the one ... you are welcome!!!

 

[Atlanta Sweetheart]

My son was born with TOF

My son was born with TOF

and had his correction at 22 months old in 1976. He was followed closely by his cardiologist and around the time he was 18 years old it was mentioned that he may need more surgery in the future to put a pulmonary valve in as his had been eliminated when his pulmonary artery was enlarged in infancy. The Dr. told us the average time for PVR was usually between the ages of 18-22 - My son had his repair at 27. About a year before his repair he became short of breath and tiring while snow skiing in Colorado. He had his repair and had a pig valve put in -- he's very active, hardly misses a weekend at the slopes. He has more energy now than he's ever had before. He had surgery about 18 months ago. He probably will need another replacement sometime, but he's hopeful the next one will be done by catheter. I hope he's right!!! He's doing great now and I am sure things will go well for you too. Best of luck and I'll be thinking about you and sending prayers too.

 

[imhayley]

Welcome

Welcome

Hello and I just wanted to welcome you to VR.com.