Tricuspid Valve leaking AGAIN!

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ILoVeNY25

ILoVeNY25

Well-known member
Joined
Mar 23, 2002
Messages
368
Location
Flushing, Queens, NY
Hey Everyone,

I went to the cardiologist for my belated 1 year check-up. Seems the aortic and mitral valve are doing good. Heart is back to somewhat normal size. EF is about 70. So, Not too bad. But the cardiologist did mention that my tricuspid valve is still leaking at almost the same as before surgery. The tricuspid was repaired. Anyone else have this problem? I know not many here have tricuspid insuff. but I know that some of us *lucky* ones have 3 valves messed up. I expected a "trace" leak but it's leaking to the point that 14 months later there's not really a difference in the valve. The doc told me not to be concerned and it's not uncommon, But I'm wondering if it will have to be replaced in the future and if leaking tricuspid valves are troublesome? Any input would be greatly appreciated. Hope everyone is well. Take Care!

:eek:
 
Joe has a mechanical aortic and mitral valve and his tricuspid has a leak, and it has been characterized as severe. It had a leak when he had his mitral surgery, but didn't need any work done on it. His leak will probably always be there. He has a pacemaker and the lead goes through it. It was looked at along with all his other valves in his month long hospital stay, and no one was too worried about it. Since all of his other conditions have been addressed, he is feeling much better, so he doesn't have any symptoms from it.

It's always disconcerting to hear about leaking valves. It sounds as if your cardiologist will be keeping a good eye on it.

Best wishes.
 
Hi Nicole,

Sounds like good news if they tell you not to worry about. Heck, who wants to go back to surgery, correct;)
Understand you have been dragging. I would assume this could have something to do with the valve? Your EF is well preserved given prior history.

My cardioligist once told me a story about Tricuspid valves. For fun during medical school they would do echos on each other. That type of reguirg can come and go. I have shown trace reguirg from time to time myself.

Give your surgeon a call to get his opinion on the situation. I am sure if you were in any sort of danger they would take care of it ASAP.

Wishing all the best to you! Take care.
 
Hey Little One!!!

So good to hear from you!!! I'm sorry about your tricuspid valve....hopefully it won't need anything for quite some time. How have you been other than that???? We've missed your posts, girlfriend.

Evelyn
 
Hi Nicole,

I'm sorry you arn't feeling as well as you had hoped. I'm glad that your EF is doing so well and that your heart isn't as enlarged as it was but I wish your tricuspid valve wasn't leaking as much as it is.
It's not so easy to find alot of information on it is it?

What changes did they make in your treatment? When do you have to go back again?

I'm one of the "lucky ones" you mentioned with three involved valves. I am still in the waiting room but I have met with my cardiac surgeon and he mentioned almost as an afterthought that when he replaced my aortic and mitral valves that he would check the tricuspid going in and after replacing the other two, he would check it going out as well. If it hadn't improved than he would repair it at that time. That made me think that they must be able to get to it without disturbing the others. Whether that translates into an easier surgery I don't know. I wonder if there is even a less invasive approach.

Anyway, I hope you start feeling better again. I hate that you are still symptomatic, I really really do.

Do you know what kind of repair you had done?
Take care of yourself Nicole and let us know what developes.

Betty(bvdr)
 
Lately I've been changing medications like Madonna changes hair colors. I went from Toprol XL since surgery, Then two months ago it didn't seem like enough. So they put me on Lopressor and now they changed me to Atenolol. Which in my opinion won't be enough. My big problems are that I don't have high blood pressure but my heart beat is extremely fast. And I'm having a lot of arrhythmias. But because of the meds, My blood pressure is lowering too much. It's kind of like I'm damned if I do, and I'm damned if I don't. These meds are taking such a toll on me that it's been a little unbearable. Dizziness, rapid heart beat, EXTREME fatigue. These side effects are a killer. We'll see how I react with the Atenolol and then I'll be put on another holter monitor and then a follow-up in 6-8 weeks. YAY!!! LOL. Getting frustrated. I was also wondering if anyone know anything about Limited disability. I've had to cut down on hours at work and I just can't seem to be making ends meet. I don't want to go on disability but I need some extra financial help. Has anyone heard of this? Like the state paying for part-timers? I don't know what to do. If anyone knows about this please let me in on it or even where to go to look it up. I've already looked on NY states.gov website. Help! :confused:
 
Nicole the only way you could get limited Disability would be through your employer and only if they had that as part of your insurance package. It's usually reserved for management etc,.
If you truly think that you'll no longer be able to work full time anytime in the future, then get yourself an attorney that specializes in Social Security Disability and apply for it.
It takes a long time, for most people, to get approved, so the sooner your application is in, the better. I won't lie to you, it's a very rough ride. That's why I say get an attorney to work with you. They get paid out of back benefits and their fee has to be approved by Soc Sec., so you should not need any money upfront. Mine required a $100 retainer which he refunded when my case was approved. If he hadn't, he'd of been in violation of Federal Law.

You may work a little while on Disability. The laws are always changing and I can't keep up with them, but I believe you can make up to $799 a month before they may consider terminating your benefits. I really need to check out the current laws.
(Your benefits will stop if you work at a level we consider "substantial." Usually, average earnings of $800 or more a month are considered substantial.) Anyway, here is a link to answer most of the other questions you may have:
http://www.ssa.gov/d&s1.htm

The only thing that may keep you ineligible is perhaps your work history. You may not have enough credited years to get it yet. You won't know unless you try.

Good Luck My Friend! ;)
 
Hi Little One,
If I can step up on Janie's soapbox. have you tried magnesium for the arrhythmias? I get magnesium gluconate from GNC, not just plain magnesium oxide, and take 500 mg a day, which does the trick.
My blood pressure was elevated recently when I went in for a doctor exam, white coat syndrome. Then I had surgery to have cysts removed, and they took my blood pressure afterwards, while I was still coming off the anesthesia: the blood pressure was right on, the heart rate had slowed right down. I wouldn't mind having the anesthesia more often for those side effects.
My two cents worth.
 
hi nicole!
so good to hear from you again; we do miss your presence!
i'm so sorry about your tricuspid though. maybe some more experienced and knowledgeable folks will come along and help more, but i truly don;t know much about it. i do, however, remember reading several posts of people with the same thing. maybe, as gina said, it will end up being nothing to worry about. i hope so.
jim has a great point in mentioning the magnesium. i know many of us here take it and it often works.
please keep us posted as find out more about your condition... meds, valve, bp, arrhythmias, etc.
wishing you all the best, sylvia
 
Hi!

Haven't even come onto this board in almost two months, saw yourpost and thought I would comment.

My husband had two valves replaced a year and a half ago. To make a long story short, he did not recover as well as we had hoped and an echo 6 months later found a severely leaking tricuspid valve. PRIOR to that, he applied for SSI. (social security disability). He was approved in three weeks. I think the Dr.'s notes, along with a report from his cardiac rehab (he has exertional limitation) was the deciding factor. He has a med list a mile long. Important question...........do you retain fluid?
My husband takes 120M of lasix daily. There have been a couple of times he took 40MG more, when he took on extra fluid. (This is when he does too much....on his feet too long.) His cardio has been emphatic that fluid control is the key to tricuspid leakage.
Good luck to you!-Marybeth
 
I haven't had surgery yet, but my problem is the tricuspid valve. Congenital defect they tell me although it wasn't diagnosed until 45. I have been told I will need a tissue valve, that mechanical is not an option. I am still so overwhelmed by all of this.
 
Hey Young'un - nice to see you but hard to know that you are having these problems. The Atenolol should slow down the heart beat. My blood pressure went down during my recent hospitalization and blood pressure med was discontinued, but not the Atenolol. It still hasn't come back up except when I go see my primary and he told me to resume the bp medicine, but he remarked that Atenolol is a very good med for the heart, if needed.

As to applying for disability - think about what Ross has said. I used to be a social worker and every single case was turned down the first time by Social Security. The applicant must keep trying - and keep trying - and keep trying. But when it finally comes through, payment is retroactive and a big check arrives. And yes, an attorney might be necessary, but won't cost you out of pocket.

New York state has, in the past, had a reputation for having helpful programs. Have you checked into this. I wish you well, Little One. You are always in my prayers.

Love - Ann
 
Peggy in Alaska -

Being overwhelmed is a pretty common initial reaction to Valve Disease. It would be helpful to educate yourself on the different types of valves that are available. See the Valve Selection Forum and also ckeck the links to St. Jude and other valve manufacturers.

Note: You will most likely get more responses if you post your questions as a NEW Topic under the appropriate forum.

What options has your Cardiologist recommended?

'AL'
 
Thanks, Al:

I think I am fortunate that I have a number of years [hopefully] before I have the replacement. My cardiologist says it will be tissue, not mechanical and it will be a replacement, not a repair. I think they prefer to use the mechanical valves in the left side of the heart. Thanks for the advice re: using New Topic. I will keep that in mind and will definitely check out the links to valve makers.

Take care.
 
Hello Nicole...sorry to hear about the leak. Does your doctor offer any more information beyond "its not uncommon" and not to worry about it?

I'm also on Toprol - XL - 100mg morning, 50 mg evening for rapid heartbeat. At times my blood pressure drops to like 110/65, and if I leap out of bed too quickly the room spins like a top. It makes me sleepy sometimes. I asked to be taken off of it, but my cardio actually INCREASED my dose. He feels it's the best med for me and asked me to try to stay on it for a year - that I would "adjust" to it. Seems like things are getting better after about 6 months.

Johnny
 
Hi Nicole, I'm sorry to hear about your tricuspid valve. As with the disability...depending on how much you pay in will give you an idea of how much you would be able to recieve. There is a link in the thread of friend who just don't get it(maybe Ross can put it here?) and THAT link has a link that tells you whether or not you qualify for SSI or SSDI, and that link can take you to a site that will tell you how much you can qualify for. Typical government websites, I know. Good luck, Nicole, if you don't win the first time, just keep appealing...most people have to fight for at least 5 years to get it, the good news is...you get back pay.:D
 
My battle for eligibility started in March of 95. I never got approved until December of 97 and then only because I got a lawyer on the case. I had tried all by myself only to be stone walled and near the end of hope. All it took was one phone call to the regional office from the attorney and one additional medical record.

The funny thing is, I didn't get it for my heart and lung problems. I got approved over my hip replacement. Go Figure! The heart and lung thing is secondary to a hip?
 
Another help is your local senator's office. I once knew personally a senator's aide. She ran the senator's office in Orlando. She told me that their greatest number of complaints came from folks needing disability/getting put off by Social Security people and that the senators dreaded those complaints more than any other ones. They actually acted on those. Senators are notorious for NOT acting - they just send you a letter, usually, saying 'thanks for writing'.
 
A few decades ago I worked in my senator's office in Washington DC. I remember the aide who was the "caseworker." She got a lot of "miracles" worked. It might be worth a shot to check out your senators and House members in Washington to see if any of them have a conscientious caseworker. You could also start with their "home" offices in your area. All it takes is one person willing and knowledgeable of how to pull the right "strings."

By the way, Nicole, great "cover girl" photo there!
 
Me too!!

Me too!!

When I went for my 3 month check up in february after my avr, they noticed a severe leak in my tricuspid valve. I had mentioned getting tired again, swelling of feet and ankles and a pulse on the right side of my neck. I am now on 40mg of frusemide (lasix) and 25 mg of spironolactone. When I was seen 2 months later, the consultant thought that the leak was moderate rather than severe, and that he "hoped" I wouldn't need further surgery. I cannot describe how desperate I felt when they first found the leak, so I can well imagine how you must be feeling, especially after such a complicated surgery in the first place. I am now back at work and coping ok, but sometimes feel that I am still retaining fluid more than I should be. Also my pulse has never gone back to its pre-surgery state of a pretty boring 72 bpm, it tends to hover between 90 and 100 bpm. I am having no treatment for this, however.

I did read that sometimes surgeons remove the tricuspid valve in intravenous drug users whose valve has failed (due to their habt)without replacing it, so presumably it isn't as critical a valve as say the aortic or the mitral. I found that this bizarre little fact gave me some reassurance.

I hope things turn out well for you. It seems very unfair that you should have all this to contend with at such a young age. Love and prayers to you.
 
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