problems after valve replacement

[hagai_sela]

Hi,
My late grandfather, my father and myself all have bicuspid aortic valves. My grandfather was diagnosed late and died from it in 1982 at age 59 after a few surgeries.
My father is 65, had a valve replacement 3 years ago and is now in the hospital again with water in his lungs, an oversized heart (7 centimeters) and both his mitral and aortic valves are not functioning well. They are still trying to figure out what caused it but it seems that there was something wrong with the replaced aortic valve.
I would appreciate any help / insights regarding what my father is facing, since he is really worried of becoming a burden on the family. Will another valve replacement work? (They have to replace both the mitral and the aortic valves this time) Is there any way the heart can "shrink" back to its normal size and function properly? If it can't, what can and can't he do with an oversized heart?

Thanks,
Hagai.

 

[Bill B]

Very sorry to hear about your father's current problems. Certainly we all hope he will completely recover from this. Second and even third valve repairs or replacements are quite common and heart enlargement from valve failure most often recedes after valve repair/replacement. Just how well your father is likely to do and what his doctors should do to help him is really something you need to ask the doctors directly. Only they know enough about his condition to give a relevant answer beyond the generalities I mentioned. Have hope and talk to the doctors.

Bill

 

[tobagotwo]

I'm sorry you're dealing with such difficult and upsetting times with your father's problems. While we wouldn't have enough information to give you an exact answer, there are some likely things to consider...

The fluid in his lungs must be cleared first. He will feel better once he can breathe again.

The oversized heart can be from a variety of things.

If it's from a problem with the aortic valve he received, such as structural valve failure, regurgitation from insertion of an oversized valve, or patient-prosthesis mismatch (where the valve opening is too small for him), then new valves are the only reasonable answer. If it's from infective endocarditis, new valves are also likely required. The cardiologist will have to determine whether the mitral issue is an issue with the valve itself, or is being caused by the heart enlargement. When valve replacements are successful, the enlargement generally goes away over the course of six to twelve months in a process called remodelling.

If the hypertrophic (enlarged) ventricle is an idiopathic myopathy, which means a heart muscle problem that has no known cause, then there would have to be a determination if valve replacement(s) would help. Hopefully, this is all in his left heart, and his right heart is not greatly affected. In some cases, enlarged hearts are even treated by cauterizing or actually cutting away extra heart muscle.

As his heart is not in great shape right now, it will likely be a difficult recovery for him. However, everyone reacts differently, so he may fare much better than it appears to you now. A good number of people on this site have had repeat operations, including myself.

Best wishes,

 

[ALCapshaw2]

Welcome Hagai,

We have several members who have had (and survived) repeat surgeries.

The important thing is to find a surgeon with Experience dealing with BAV (and possible Connective Tissue Disorders) as well as experience dealing with the usual Scar Tissue encountered in Repeat Surgeries.

Do you know what kinds of Valves your father received in his first surgery (Mechanical or Tissue - If Tissue, Bovine or Porcine?)?

'AL Capshaw'

 

[Johan]

Hagai, I just wanted to welcome you to the site, albeit under such trying circumstances. I cannot speak on multiple surgeries but as far the hypertrophy is concerned, I had mild left ventricle enlargement, that cannot be compared to your father's situation, but the good news is that it has shrunk back to normal 9 months after AVR.

 

[hagai_sela]

Thanks for the replies, information is indeed power...
My father has a porcine biological valve.

Hagai.

 

[Lynlw]

Thanks for the replies, information is indeed power...
My father has a porcine biological valve.

Hagai.

I'm sorry to hear your Dad is having so many problems so early. I know how scarey it can be to see a loved one oing bad and needing another surgery much sooner than expected. Do you happen to know what brand/name his valve is?
As others have said without more details, it is hard to answers some of your questions, but IF the fluid is caused by his valve problem then chances are pretty good, he will do much better after the recovery period for getting new valves. many people have needed and done well and got pretty much back to normal after 2 or more valve surgeries. Of course every person is different and you can't know how anyone will do and alot depends on what other issues are going on, so really the best persons to ask about your father is his doctors,.
I will keep you in y prayers
Lyn

 

[hagai_sela]

Hi,
I visited my dad today and showed him what you wrote. Apparently you guys know what you are talking about, since his cardiologist said about the same...
One correction - his current valve is Tissue but he doesn't know from which animal.
Other stuff I left out - they also put a graft on his ascending aorta, and he doesn't know if they'll have to replace it in the next surgery. His cardiologist also said that they'll probably only fix the mitral valve, since it is not functioning properly only because of his heart being oversized. He said they'll put a ring around it so the flaps will close properly.
Lyn - I don't know which brand the valve is, I'll ask him if he knows. It's a set of a Tissue valve + a graft, when he had his surgery in 2007 he was the first in Israel and the eighth in the world to get one. I think they brought it from Germany.
Regarding the choice of surgeon - His first surgery was performed by prof. Ehud Raanani here is Israel, and all the people we asked said that he is number 1 in the country in this kind of surgery.

 

[Lynlw]

If his valve is that new I doubt we know anyone else that has it , was he part of a trial? Ho is he doing today? Are they having any luck getting the fluid off his lungs? That makes sense what the surgeon said about the mitral valve.How are you and the rest of the family holding up?

 

[hagai_sela]

He wasn't part of a trial, just one of the first who got this valve. He said today that he feels the same way, but he seemed a little better to me (maybe this is wishful thinking). I don't know about the fluid, they are giving him medicine for it and I guess they know what they are doing.
I felt awful yesterday because we thought the situation was much worse than it turned out to be, I am a lot better today. The rest of the family is OK, I guess, we have already been through a lot.

 

[sylviayasgur]

hi hagai,
welcome! as you can see, this is a place of great information and support. i hope your father will feel a little better with each new day. please try to be patient.
it must be so difficult for you and your family, considering we think that the patient is being "fixed". that is not always the case.
there are several here who have had multiple valves replaced and those who have had re-surgery to replace already operated on valves.
please keep us posted on how your dad does. sounds like he's getting the care he needs and you're in good hands.
all the best,
sylvia

 

[Lynlw]

He wasn't part of a trial, just one of the first who got this valve. He said today that he feels the same way, but he seemed a little better to me (maybe this is wishful thinking). I don't know about the fluid, they are giving him medicine for it and I guess they know what they are doing.
I felt awful yesterday because we thought the situation was much worse than it turned out to be, I am a lot better today. The rest of the family is OK, I guess, we have already been through a lot.

I 'm glad things are better than you feared yesterday. I know how frightning, and exhausting it can be since my son has had quite a few surgeries and my Mom also had 2. I know it is hard to remember to take care of yourself, eat sleep ect, so you are not wiped out by the time your dad gets home and will need your help.

 

[Lily]

Hi,
My late grandfather, my father and myself all have bicuspid aortic valves. My grandfather was diagnosed late and died from it in 1982 at age 59 after a few surgeries.
My father is 65, had a valve replacement 3 years ago and is now in the hospital again with water in his lungs, an oversized heart (7 centimeters) and both his mitral and aortic valves are not functioning well. They are still trying to figure out what caused it but it seems that there was something wrong with the replaced aortic valve.
I would appreciate any help / insights regarding what my father is facing, since he is really worried of becoming a burden on the family. Will another valve replacement work? (They have to replace both the mitral and the aortic valves this time) Is there any way the heart can "shrink" back to its normal size and function properly? If it can't, what can and can't he do with an oversized heart?

Thanks,
Hagai.

I don't know if this has been mentioned, but valve surgery outcomes are better now than when your father's father died; the medical technology has advanced. That reminder might encourage your father.

Also, for what it's worth, when I needed my bicuspid valve replaced, the valve was malfunctioning so badly that it was making my mitral valve malfunction also and there was a possibility that I would need surgery on both valves. But happily, as things turned out for me, after the bad aortic valve was replaced, the surgeon discovered that the mitral valve was then working well and it didn't need work on it afterall.

Hoping for the best for your father and you and your family.

 

[nngbwh]

Welcome aboard, Hagai. Sorry to hear about your father current problems.

 

[hagai_sela]

Hi,
One more question - The doctors say that the valve was hurt because of an infection. My father had endocarditis two years ago, and the valve failure was probably caused by this infection, or another infection that came afterwards and was not noticed, causing a degradation in the valve's state. Is there any way you guys know of preventing this in the future, or at least how he can recognize that he has endocarditis?

Hagai.

 

[OldManEmu]

Hagai, if your father has had endocarditis previously this most likely caused the valve failure.
I had endocarditis of the native valve.
Once you have had endocarditis you are at greater risk of contracting it again and prosthetic valve endocarditis is very bad as your father has found out.
Be active in getting any infection treated promptly; get antibiotic coverage for medical/dental procedures that may cause bleeding.
Endocarditis can be acute which causes deterioration and death within a matter of days.
Sub acute endocaritis which I had can feel like a vague flu that appears to improve when on antibiotics and then deteriorates again after a week or so once the infection builds up again after the antibiotics are stopped.
I had it for 9 months before being diagnosed. In hind sight the only really unusual symptom was unbelievable night sweats after I was off antibiotics for about a week.
Blood cultures are the only real way to identify it, an echo may also show vegetations on the valve, I didn't have any vegetations on my valve.

 

[ALCapshaw2]

Endocarditis can indeed damage valves. There have been several threads on this subject.
You can find them by doing a Search on VR.org for keyword "endocarditis"(see Advanced Search on the Red Line at the top of the page). Be sure to scroll down the page and select "Any Date".

You may also want to do an Internet Search for "Endocarditis" (Google etc.). And of course have him discuss this with his Cardiologist and/or Primary Care Physician.

Maintaining good Dental Health is a Major consideration. Patients with artificial heart valves are advised to 'pre-medicate' with an appropriate antibiotic (typically Amoxicillin) 1 hour Before Dental Procedures, especially Cleanings.

'AL Capshaw'

 

[karen14]

VERY interesting & informative thread! And my prayers are with you & your father hagai_sela.

 

[COLLEEN S]

Welcome to the site! Lots of great info here. My father was BAV and so am I. He died at age 60 with AAA, and also had a brain aneurysm. If you look in the archives for posts by Colleen S , you will see my story and yours are famililar. I didnt have any infections, so I cant really speak to that, but I do have an enlarged heart.