Replacement valve failing, why?

[Lynlw]

I'm sorry to hear about your mom, Hopefully they can help her without needing surgery. FWIW I wouldn't get my hopes too high she would be a candidate for Percutaneous replacement (TAVI) IF the problem is her current valve is too small. Since they place the valve inside the current valve the TAVI valve is slightly smaller than the valve it is placed in side, so it sounds like she would need a larger valve then they put in her last time. Also they dont make TAVI valves that fit inside the small Aortic valves yet..
I definately would ask about it, incase it is an option or there is another reason it needs replaced beside they used too small a valve the first surgery.

 

[anne casey]

Wow...I had no idea so many of you responded since the last time I updated this post! THANK YOU! It's very comforting....
I think the day after my last post, she got the call. I also called the cardio. and had him repeat to me. It was a patient mis-match that caused this. Her "gradient" level went form 16 to 28 to 40 to 44 (every 6 months) since the surgery 2 years ago...he says the "good news" is that the 40 to 44 isn't too much change over the last 6 months and hopefully it will continue to not increase much. We went to another clinic last week, that Dr. (family physician) look at the last echo results and report and was equally surprised by it. He apologized to her for this on "behalf of all physicians" for this mistake. She will have another echo at this new clinic in Jan and then see a new cardio. for another opinion. The new family physician agreed to postpone another surgery for as long as possible, but she refuses to have another OH surgery anyway. no one has suggested any other type of test as of yet.
On another note...my 16 yr. old had a gradient of 30 a year ago...he will see cardio. in Jan. also....just alot to deal with at this time of year.

 

[Ovie]

So sorry to hear about this, can't imagine what your mother, yourself and family are going through.

I do have a question and if you don't feel like answering no hard feelings, But was this the Mayo Clinic in Rochester? and if so what was the surgeons name?

 

[anne casey]

Mom had her 2nd opionion. He says she's at a gradiant of 44. He's confused by the report also...he has ordered the actual video of the last echo to review and compare to the next echo. She will have another echo in March (that will be 6 mo. since the last one) Pray for her. Had to place Dad in a home recently and his health is failing on top of all this. very stressful time. My son had his annual checkup and was told his is at gradiant of 40. I don't understand these gradiant numbers....we were told 44 is severe, yet my son went from a 30 to 40 in one year & won't need surgery for hopefully 10 years yet (we were told). How bad does your number need to be to have surgery? or do they just go by if you have symptoms?

 

[Julian]

Usually they go by a combination of both. If the numbers are bad enough with no symptoms they may recommend surgery with no symptoms. If the numbers aren't bad but symptoms say otherwise they will do surgery.

 

[Sarah_Louise]

Thinking of you all!! xxxx

 

[anne casey]

Update: Mom just had another echo this week and goes for results next week...please pray for good news! She just need a break from all the stress lately....(had to put a loved one in a nursing home recently because of dementia....not easy to do at all.) thanks! :angel:

 

[escargome]

Sending prayers and hugs for you and your mom that the test results conclude she doesn't need another valve replacement. Try to stay strong. ( I know easier said than done)

 

[anne casey]

Thanks for your words of encouragement!!! Prayers do help!!! Update: Mom's cardio. is now thinking that her thyroid medication (which has not been altered for years) is too much (according to her last lab tests, her numbers are not in the normal range) and this is causing her heart to work harder than needed and thus causing her aortic valve to be smaller than it is actually is! Her mean gradiant went from a 44, 6 months ago to now a 49....so at least that was not too much of an increase. Another Echo in 6 months. We are now working on communicating with regualar Dr. to lower her thyroid med. She has lost @ 70 pounds since surgery and so another reason that med. may have to be changed (she's down to 152 lbs. now, not as much of her to medicate anymore!)....she lost the sense of taste after surgery and just doesn't eat as much anymore, she also drinks Ensure to help supplement her diet. (No Dr. can give us an answer or help with the loss of taste.) She feels good tho....and that's the important thing. Anyway, he has given us hope that maybe her valve isn't "failing" as we were first told and that another surgery may not be needed so soon! :smile2:

On another note...my son who is 16 started Baseball practice this week....doctor said it's fine for him to participate and I've told coaches to let him pace himself when running condo's this first week, but not to worry that he's going to have a heart attack while they are coaching him either! He's the last one done running...but he's having fun, and we're all looking forward to another baseball season!

 

[Roberta]

Well that certainly is encouraging news for you and your mom. I hope that the change in thyroid medication does the trick. I have never heard of thyroid meds altering heart function, but then again I am not a cardiologist.:wink2: I will be sure to ask my cardiologist about this when I see him.
Are they going to keep monitoring your mom and how often?

This is also additionally good news for your son! So glad he is out enjoying himself on the baseball diamond.
Good news all the way around. :thumbup:

 

[anne casey]

Yes, one has to enjoy those Dr. visits when things sound positive! she will have another echo in 6 mo. She has to give blood today for another thyroid test (last one was in Dec. and that number was not in the normal range, although reg. Dr. thought it was fine at the time.) But hopefully, her reg. dr. will agree to adjust her thyroid meds now....if not, then it's back to Cardio. to argue her case to the reg. Dr!
Anne

 

[sarahsunshine]

Glad everything is looking better for you mom (and your son). Keep us posted on their progress.

 

[anne casey]

Glad everything is looking better for you mom (and your son). Keep us posted on their progress.

She has another echo in a few days and we get results next week. They changed her thyroid meds a couple months ago again too (they think this was causing too much pressure across the valve)....prayers please ....for a good report next week! thanks!

 

[anne casey]

She has another echo in a few days and we get results next week. They changed her thyroid meds a couple months ago again too (they think this was causing too much pressure across the valve)....prayers please ....for a good report next week! thanks!

She was told that if she had never had the replacement surgery yet, that now is the time to replace it. But being that its only been not quite 3 years and she has no symtoms to keep monitoring it and evaluate in6 months again. This cardio. said that the pig valve they gave her 3 years ago is smaller than what they usually put in and that the surgeon at the time must of thought she was smaller or petite in the "inside'. She is so terrified to go through surgery again at her age of 83 and just lost my dad....so it's hard. Wish doc. would do a non invasive surgery, but they always make it sound like that's not a safe option.

Our 16 year old boy will go for his eval. in Feb....hoping he'll be cleared to play another year of baseball. That's our update for now..

 

[Fundy]

Has your mother changed her mind about having a reop yet?

Those pig tissue valves like the Mosaic have a very good record once they throw out all the early failures due to installation. I guess their performance and durability are why they still get recommended by some surgeons and get chosen by patients. Those frequent early failures are what scared me enough to decide I absolutely didn't want a tissue of that type, even though it actually may be the best tissue valve.

Have you discussed what type of valve to use for the replacement.. I'm no expert for sure, but something like the Carpentier-Edwards bovine valves seem to have far fewer of the early failures due to installation errors.

It seems a bit on the dangerous side to try to squeeze more time out of a valve once its at the time for replacement. It might be informative to discuss what risks of damage could be occurring by waiting.

If your mother is still uneasy about choosing another surgery, it might be useful to point out that most surgeries do go well and don't have such a horrible outcome. she just ended up being one of the unlucky few that have severe problems. The actual chances are still very high that a surgery will leave her feeling much better and most likely be her last surgery for that valve.

 

[virginian777]

hi folks i have a mechanical av thats 7 months old went for a tee test dec.6th 2012 dr said was leaking don't know what they are going to do.but from what i have read its not that uncommon most of the time it seems they watch it and you go on with what ever you do with no problems.i sure your mom will be fine these cardo.dr are a different breed they take a lot of pride in what they do. at least thats what i have found and my x is a rn and she says the same thing.she uses a different word for them thou.

 

[SimonB100]

It is not uncommon to experience leakage around teh root of the valve from suturing - this is different from valve leakage which would be a different matter, although leakage through a mechanical valve is not common to the best of my knowledge.

My father has some degree of leakage around the valve root - in most cases this should not get worse and is something you simply live with. His pressure gradient is good - hence leakage is not impacting heart fuction - perhaps you'll be in the same boat.

Wishing you well.

 

[pumpkinhead]

I just don't think there is No win win situation when it comes to valves.... I am 35. I could not even imagine having to go thru that surgery at 80 years old. They told me if they had put a pig valve in me, it would fail in 10 years or less.... mechanical valve is supposed to last my whole life, but so far its just going to send me to the crazy bin. It thumps in my throat when I lay down, and ticks loud enough for people 5 feet away to say "whats that ticking"... sometimes I wish I had the pig valve, but I can't even imagine doing the surgery again, besides the risk.

I wish all the best to your mom, and she is in my thoughts.

 

[pellicle]

life, but so far its just going to send me to the crazy bin. It thumps in my throat when I lay down, and ticks loud enough for people 5 feet away to say "whats that ticking"... sometimes I wish I had the pig valve, but I can't even imagine doing the surgery again, besides the risk.

Well the bright side is that its easier to take your pulse

Mine disturbs me the same ways, I guess I'll just have to accept it as the cost for staying around

 

[Lucky]

Hi Pumpkinhead,
I have only just seen your post about ticking but I have had my valve for 11years and do not hear it unless I listen carefully for it.
My nephews like going underwater in the pool as they can hear it then and dolphins in a theme park will not swim up to you unless reassured but I can tell you
the ticking does get alot quieter.