Confused

[heartstream]

I had OHS in june this year and they repaired my Tricuspid valve, this failed and I am worse now than before the Op.

I am on loads of meds for Heart failure and AF.

They did initially say they would re-operate next year and put a mechanical valve in. However, now the Heart Failure clinic say they will probable keep me on meds and not operate.

I am 43 and it seems they cannot do anything or what they want to do wont help.

So now I am worse off than before, why do the Op. The tricuspid valve is known for being hard to repair.

I feel like they are not telling me something. We have wrote to the surgeon to get some answers. Me and my Fionce are very confused by the ever changing information.

Not sure if there is a solution just thought this might be the only place people understand the process practical and emotional.

Thanks

Ron

 

[simon75]

My first question would be to ask what has changed from last year - what has made them change their minds about re-operating? I would hope it's because it's not needed right now and can be delayed without any irreversible damage being done due to waiting.

I'd seek a 2nd opinion depending on the answer.

Si

 

[Lynlw]

Im sorry to hear you are going thru this. Is it possible to get opinions for another center? I can't imagine at your age why they wouldn't operate to replace it since it would improve your life so much better than treating it with medds like they are now. FWIW tho, most people I know that have their tricuspid valves replaced, especially at the larger centers have tissue valves since most of the surgeons reccomend tissue valves on the right side of the heart (tricuspid and pulmonary valves) because the pressue is lower on that sidethan the left which makes it easier for clots to form and also tissue valves tend to last longer on the right side of the heart than left.


Hopefully you can get some better answers

 

[Bina]

Ron, I understand your frustration and hopefully when you hear back from the surgeon he will provide more
insight into the specifics of your situation.
Best wishes.

 

[Jkm7]

A failed repair is not unheard of. Sadly, there are a fair percentage this happens. I am very sorry to read it has happened to you.

I think this is one of those cases where you are going to have to be your own best advocate. I think you may have to put pressure and keep your name and face in front of your care providers until you get the situation taken care of in the way you want. If you sit quietly and wait, I fear that might not be good. If you are not an aggressive person, this might be a good time to become a bit more so.

Of course, I don't know your doctors or medical system or any of your circumstances and am only presenting an option for you to consider.

Wishing you the very best. Please stay in touch with us and let us know how it is going for you.

 

[Tina-marie]

HI CONFUSED
I read your post and have sent you this link to look at
http://my.clevelandclinic.org/heart/disorders/valve/tricuspid.aspx
http://en.wikipedia.org/wiki/Tricuspid_insufficiency
I hope this helps take care and do not worry Tina-marie

 

[heartstream]

Thanks everybody.
JKM7 I am not known for being layed back. I am starting to push for answers and look for second opinion. I might not get off wharfarin and beta-blockers but I hope to be of Ramapril 9heart faliyre meds) and Dieretics, if I get the Op.

I will keep you updated. This help is wonderful. It can be a lonely place dealing with all this.

Ron

 

[Paleowoman]

Hi Ron,

Stoneleigh London ? Is that the Stoneleigh near Epsom ? Do you come under St George's ?

Anne

 

[Jkm7]

Thanks everybody.
JKM7 I am not known for being layed back. I am starting to push for answers and look for second opinion. I might not get off wharfarin and beta-blockers but I hope to be of Ramapril 9heart faliyre meds) and Dieretics, if I get the Op.

I will keep you updated. This help is wonderful. It can be a lonely place dealing with all this.

Ron

Good, Ron......

We are a group of folks who really understand. Until one has walked the path we've trod, try as they may, they cannot fully understand.

Please do let us know how you are doing;
Hope you get the full attention of your doctors and get some good answer.

 

[scott.eitman]

Thanks everybody.
JKM7 I am not known for being layed back. I am starting to push for answers and look for second opinion.

Keep pushing...Most important is getting multiple opinions. Not all doctors are the same, and therefore what one misses, the other may see.

 

[Jason]

I am sorry hear you are going through this, and I wish you the best as you work it out. Please keep us informed, and know that we are all thinking of you.

 

[njean]

Dear Ron,

It's been two weeks since we last heard from you and so I've been wondering.....how are you doing? Have you talked or seen other doctors since your last post and if you have, can you please give us an update?

Don't mean to pry or be nosy but I know I worry about those people we don't hear back from.

Take care.

 

[markp66]

I just saw this post and I'm confused why they didn't replace the valve when they realised they couldn't repair it?? Thats what normally happens instead of making you go through this again. Just doesn't make sense! Definitely get a 2nd opinion. Try Guys and st Thomas's hospital in London. Some great surgeons there. And as Lyn mentioned, a tissue valve makes much more sense om the right side of the heart. It should last much longer than in the aortic position and hopefully if you needed it replaced in the future there may be a less invasive procedure. Anyway, good luck and keep us posted.

 

[jhusker2]

Heartstream,

I definitely would seek alternative opinions from well known surgeons near your vicinity. My surgeon couldn't save my valve through repair so he replaced it automatically. He explained that he could've repaired it somewhat, but didn't want me back in the hospital in 3 years for a replacement because of failure. He is very well known and respected in my town, so hopefully you find the same.. Best wishes!

Jason