new murmur after Pulm Valve replacement

[dorv]

our son is 20 and has CHD - Double Outlet right ventricle (DORV) Pulmonary stenosis and a VSD similar to TOF but the aorta is on the right side along with the pulmonary artery instead of over riding like in TOF. He had a BT shunt done in 1985 at 9 months old and corrective surgery at agae 4 in March 89, repair os VSD leak July 89, and re-repair VSD leak July 89 because of gross heart failure due to leaks and now on Dec 14 had pulmonary valve replaced with a human pulmonary valve allograft due to enlargement of right ventricle.

Surgery went well but had trouble with BP just after surgery so is on bp med. They did an echo before leaving hospital and everything was going well. Had to get more meds 5 days after leaving hospital at a medical centre (not our normal doctor) and he said everything was fine and actually stated on charts no murmur. 5 days later we had to get a clearance to fly home so took him back to same clinic but couldn't see previous doctor. This new doctor picked up a murmur. So I took him back to hospital and they did another echo. The admitting doctor in emergency came back and told us the echo report had stated there was a blockage in the valve and that is what he could hear but because of the swelling they weren't too worried about it. Then a card. came in bascially glossed over everything and said we could go home and to have another echo at 6 weeks post op.

When we came home I took him to our GP and he said it was a reduced flow murmur that he could hear.

Luke in himself has been OK.

Has anyone else had this type of murmur after valve replaced.

 

[Harpoon]

Hi there, welcome. =)

I was born with TGV in 1973 and had my tricuspid valve replaced in 2003... I knida "know the territory" more than msot of the folks here who've developed heart problems later in life, not from the very beginning.


It sounds like the changes in your son's new valve, the regurgitation and such, may just be from healing and not neccesarily a new problem or a sign that something wasn't done right.

In the early weeks after surgery there will be all kinds of little things that come up because the heart was just pummelled by a bunch of surgeons and is going to need time to recover from the beating it got. There will be a lot of swelling in various places, especially around the new valve. As that swelling reduces (or sometimes increases) you may see signs of some leakage here and there. It may be temporary, lasting only a few days or a week or it might be more serious. This is why you should be having visits with your cardiologist or surgeon (or both) fairly often over the next few weeks at least. You should be getting echos done with every visit and possibly x-rays or other exams which will give everyone a good picture of how well your heart is recovering from surgery and if there are any problems coming up that need to be addressed.


Most people really aren't "healed" from surgery for at least 6-8 weeks and some things, like the sternum, don't fully heal for closer to a year. In all that time, a lot of complications can get in the way of the healing process and it's important to monitor your condition fairly often as you recover from surgery to make sure everything is healing the way it's supposed to and to minimize any set-backs that may occur.


For the record, I had a LOT of set-backs over the first 7 weeks or so of my recovery, all of it happened in the hospital and I got immediate attention whenever something went awry. I also had a VERY atypical valve replacement for a VERY atypical condition....

I like being atypical.


Check it out with your doctors, with the limited information you've given it kind of sounds like something temporary that's just a result of how your body's healing, but it should be watched.

 

[dorv]

Thanks for the welcome Harpoon, this is a great site.

Maybe there should be a section for CHD on this site for all the congential people out there.

I know it is early days with Luke, but have been there before and so am being a lot more cautious this time. Took me weeks to convince the doctors there was something wrong last time. He ended up back in hospital (which is 1700 klm away) in gross heart failure due to a leak in the VSD patch. I had been telling the doctors there was something wrong from about week 2. Week 6 is finally when they did some more testing and flew us back to Brisbane to have 2 more open heart surgeries to fix leaks.

I have always been told I am a parnoid mother, but I don't care what people think of me when it comes to the health and well being of my children.

 

[Karlynn]

Just wanted to say "welcome" Lyn! I'm glad Harp came along to give you some information. I can certainly relate to your protective mother instincts. We are fierce! I'm the one with the valve issue, but we just got done having my 21 year old son go through tests and more tests trying to get a diagnosis for his periods of SOB (shortness of breath, gosh there's some really funny one liners just lurking there.) Found out it was asthma and pretty serious.

I'm glad you found us and hope you will stick around and join the family.

 

[dorv]

Thanks Karlynn

Glad to hear your son didn't have a heart problem, asthma is bad enough. Our youngest had asthma really bad aa a little one but thankfully she has grown out of having it all the time to now only getting it when she has a cold. But as we live in the tropics (top part of Australia) we don't have severe winters so she doesn't get many colds.

It is great to find a site like this. I am the branch leader for our support group here in Cairns. Heartkids Qld is the support group... formerly Heart to Heart Cardiac Support Group. I have been a member since 1988. We have a own website (which I have done myself ) www.heartkidsqld.org if you are interested in having a look.

It is great to be able to bounce things off others and to get their opinions.

Look forward to chatting more

 

[karenm]

Site for ACHD

Site for ACHD

Hi Dorv,
There are quite a few CHD folks here on this site. I am a 44 year old ToF, B-T shunt in 1961, correction in 1965 and now a PRV and other assorted "tune-ups" in November 2004. Like your son I have a new human pulmonary valve allograft, but I added a patch for an ASD and a Maze procedure! Kind of the blue plate special!!

There is a site for ACHD (Adult Congenital Heart Defects),

http://www.achaheart.org//index.php

It too has a message board, and a section for families as well as general information. You and your son will find many kindred spirits there, and many people that can understand what you are going though.

I do not have information to answer your question on the murmur, I am still healing myself and waiting for a 10 week appointment with my electrophysiologist -- I am still having arythmia and A-Fib. Like Rosanne Rosanna Danna said ... It's always something!

~Karen

 

[Abbanabba]

Hi Lyn,
I was born with TOF, had the shunt at 18 months and corrective surgery when I was 5..... I'm also another Aussie and I know how hard it is to find local support groups (..although these guys have been just fantastic and saved my sanity of many occassions!!..).

I haven't had my pulmonary valve repalced (yet) but I've had a murmer since my surgery 28 years ago. This has always been considered benign, but recently the regurgitation has become severe and I've been trying to work out if it's time for surgery (..loooooong story!..).

One of the really bizarre things I've learned in the last couple of years, is that many people can tolerate much worse regurgitation through the pulmonary valve than any other valve - in fact some people have lived for years without a PV at all!! Don't ask me how, I haven't a clue, but I was chatting with one of these people just the other day.

I guess your son needs to give his body time to fully recover from his surgery and then assess how bad the murmer is. If it is minimal and doesn't seem to be worsening, it may just require an annual echo to keep an eye on it (..which is what should happen anyway..). It sounds like he's got an echo scheduled in a few weeks, so they should be able to get a better idea of where things are at from there.

Please keep us posted on how this goes. I hope it all turns out OK.

Best wishes
Anna : )

 

[Scottie]

Hi Lyn

Hi Lyn

I'm another TOF with complications 44 yrs old and living a normal life as a mother of three and working full time as a teacher. I like you live far away from my hospital ..we live in the Scottish Highland and I had my last surgery (# 4) two years ago in Edinburgh. I emerged from my surgery with a murmur which the Drs seem quite happy about and because we are told so little here about our condition (unlike the Americans ) I have to trust them . I suffer from HBP and constant anemia which makes me tired but I work around it ..
I'd tend to give your son time to recover properly from his op and then ask for a proper check by his heart Dr even if it means a long trip ..
Take care and good luck ...
Scottie