PVR? Anyone?

[HGuillette]

Hello all,

I'm new to this forum, researching valve replacements as I'm due for one fairly soon (in the next year or so).

I have corrected TOF (Tetralogy of Fallot), but now it appears that the remains of my pulmonic valve are failing -- both stenotic and regurgitating -- and will need to be replaced.

It appears that this is not a common problem for the folks on this board ... so I'm wondering how PVR surgery relates to AVR or MVR ... is it more/less difficult, any extra complications, etc.

My annual follow-up with the cardiologist is in 3 weeks, and I'm trying to do my homework beforehand so that I can use the time wisely ... know all of the right questions to ask, etc.

Thanks in advance for your help/advice!

Heather Guillette

 

[Ross]

Hi Heather

I'm by no means an expert or even a novice for your type of replacement, so I'll leave it to someone else to help here.
you've certainly come to the right place. Everyone will give you advice and hand holding as needed.

Someone should be around soon, hang in there!

 

[Nancy]

Hi Heather, welcome

Hi Heather, welcome

This is a terrific site. You'll love the people and posts you find here. There a wealth of information, and we'll be your cyber friends as you go through the next year and beyond. I hope you will add lots of information of your own also.

The people on this site who have had Ross procedures have had Pulmonic valve replacements, so I'm sure that you will get lots of feedback on the difficulties, or not, of this replacement.

Again, welcome and hope to see you often here.

 

[jade45]

PVC

PVC

Hi,I'am jade new here to ,but as to your question I found this wonderful site www.acc.org which goes into really a full
detail of all types of valve replacements, I would visit it has a lot to offer
you on information.

 

[mainframe]

Hi Heather,

I've been told the pulmonary valve replacement is an easier procedure than an aortic replacement.

As a soon-to-be Ross Proceduralist (NEW MADE UP TERM ), it's been explained that if my pulmonary valve goes bad, that replacing is easier than doing a aortic. I'm not exactly sure what that means, perhaps less time consuming for the surgeon.

In any event, good luck with road you are beginning to travel. I've found the information I've found here to be invaluable in both my decision making process and as the result of my decisions near.

Chris.

 

[Scottie]

hi Heather

hi Heather

I was really interested to read your post ...I too am a corrected TOF
patient needing more work ....I need thickened muscle around the pulmonary
valve cut away and hopefully a repair of the valve rather than a new one
.....I'm 41 and was not expecting more surgery as I lead a full life and
have been almost fine for yrs ...what are your symptoms ?...I just haveextreme tiredness and some breathlessness and a tendacy to be anemic ...
However because I live in Scotland I have a long wait for surgery ...it
took me six months to get a second opinion and then another three month
wait for a Cath ....now I've been waiting to meet my surgeon since Dec ...and
I'll have a six month wait for surgery after that ...let me know how you
get on ....it nice to meet a fellow TOF LOL
Take care
Scottie

 

[HGuillette]

Thanks!

Thanks!

Thanks everyone for all of your support & best wishes!

My surgery may be a while off. The cardiologist has been hinting around about it for a few years now, but since (up until recently)I've been symptom-free I hadn't really taken him seriously.

Now, however, I'm starting to feel it ... get dizzy spells from time to time, tingles in left arm, and am generally worn out a lot of the time. I tend to sleep most of the weekend to "recharge my batteries", and my poor husband is starting to get worried. So ... it's off to the library for me to start research! Annual is in 3 weeks and I want to be prepared.

Another reason why I'm thinking that it may be better to do it sooner or later is that I'm currently covered under EXCELLENT insurance! I checked last night and Cleveland Clinic is in-network ... gotta take advantage of that!

Scottie,
it's nice to hear from a fellow TOF! I'm only 31 and have lived symptom-free up until now. How old were you when you had the correction? I've been reading some things in the past few weeks about how the current "wait and see" attitude with the PV repair/replacement in TOF patients may not be the best thing as it can lead to RV damage (and tricuspid damage too). Hopefully you can convince them to take care of you soon, as I've read that patients' quality of life drastically improves after the repair/replace. I'd love to talk to you sometime, email me at [email protected] and we can compare TOF notes!

Again, thanks everyone for your support, talk to you soon!

Heather

 

[Zazzy]

Hi Heather,
As far as I'm concerned ANY heart surgery and recovery is difficult for the patient. The surgeons have it easy... all they have to do is operate! lol

Take care,
Zazzy

 

[dorv]

Pvr

Pvr

Heather,

was just wondering how your PVR went as our son has just had his replced. He has a very similar defect to TOF

 

[Harpoon]

There are some additional considerations to be made for people with a congenital heart defect, usually a pediatric cardiologist/surgeon is involved in some way or another in the care of such a patient or possibly a physician that specializes in adults with congenital heart defects.

I had my tricuspid valve replaced when it failed which is a fairly common "side-effect" of the procedure I had to fix the transposition of the great vessels I was born with. My surgeon was a fairly well known New Zeland native, Dr. Roger Mee, who's been at Cleveland Clinic in Ohio for a number of years. He specializes in pediatric heart surgery. I had about five other pediatric heart specialists while I was in Cleveland in addition to my "regular" pediatric cardiologist who's been following my care for over ten years now.


PVR's aren't any more or less "difficult" to do I think over other forms of heart surgery. They're all complex procedures that demand the highest skill levels, facilities, and attention. I think mitral valve repairs and replacements are a LOT more common than other valve surgeries because that seems to be a valve most effected by problems later in life whereas damage to other valves seem to be more common in people born with heart defects and that's a failry small percentage of the general population.

It's a statistics thing...

 

[Debbrn]

pulmonary valve replacement

pulmonary valve replacement

Dear Heather,

I am 39 born with TOF. I had my pulmonary valve replaced in 1990 with a human cadaver valve. I was asymptomatic at time of repair but, my pulmonary valve regurg was severe, my R ventricle was dilated, and my tricuspid valve was leaking also. So far everything is just fine. I see my cardiologist next week for my annual evaluation.

Another website that may be helpful is achaheart.org.

 

[karenm]

Hi Heather and Scottie,
I am another ToF. Debbrn got my great tip to you first -- about achaheart.org. It is a site dedicated to people that have Adult Congenital Heart Defects. There are a large number of ToF there, many who have had a PVR and many who are waiting. Please check that site out as well as you will find a number of people with similar stories (asymptomatic, then a little short of breath and next thing you know, you are getting new body parts!!)

There are also some great links in the reference section of this site -- a good place to research.

Just a little about me (with a little sleuthing you will find many messages from me in both sites, as I started my four month journey that lead me to a new valve.) I had a B-T shunt in 1961, correction in 1965, a beautiful healthy son in 1998 and now an ablation, PVR, ASD repair and Maze in November 2004. I am feeling great after the surgery, but still have some arythmia to deal with and A-Fib. I'll happily respond to a pm, but please do check out the achaheart.org as you will find a number of younger people (than me) there as well that you might have much in common with.

~Karen

 

[Ross]

I do hope you all realize that this thread is nearly 3 years old!

Some answers may not be had because some of the posting members have left the forums.