Valve Malfunction

[djacq]

I became too complacent with my heart issues. I have checked into the group off and over the years with feelings of empathy for what everyone was going through. I never believed I would be back again with a possible malfunctioning St Jude’s Valve done in 2002. The unknowns have been stressful and an emotional up and downs. It started with a routine Echo in July that showed my pressure had gone from 30 to 80. I was told it showed a possibility that one of the two leaflets wasn’t closing all the way, Panus??? Inconclusive was the report. Then I had an almost 2 hour TEE which I found out was really useless as they couldn’t even visualize my heart due to a large hiatal hernia that blocked the view. A fluoroscopy was done and that was inconclusive. I had a stress echo yesterday and had a severe breathing event that was caught as an artifact on the test and heart related. I am not having symptoms but wonder now if my breathing issues have been a symptom and its not asthma. The next step is some kind of cardiac cath. I was told with a mechanical valve, you can’t do a standard cath. They will put two caths in my heart and run another under the valve and make a hole in the septum to get the gradient measures, I think. My idea, if time is not a factor is to repair the hiatal hernia and go for another TEE. This has all been on the heels of surgery for a torn meniscus and fractures of my spine. Thought the stress echo would kill me! Its hard to know where to begin. What to do at age 71. I retired on 8/30/14 so have been also dealing with Medicare, new health insurance, Part D and coverage for my In Ratio test strips. Would anyone have had experience with panus on a leaflet? I am told it is may require a reop? I can’t imagine any surgeon anxious to do a re op and I am not anxious for a tissue valve which I would think would be more prone to panus? Any input you may have to help me understand why my “lifetime valve” only lasted 12 years. Thanks for listening.
Donna

 

[BlindFaith]

Sorry to hear of your issues Donna. I can't help with your questions, but I do hope you get the right diagnosis and get things worked out quickly. Sending prayers.

Dan

 

[pellicle]

Hi

I became too complacent with my heart issues....

does this mean you missed some checkups?

It started with a routine Echo in July that showed my pressure had gone from 30 to 80. I was told it showed a possibility that one of the two leaflets wasn?t closing all the way, Panus???

it could be panus, which would be my first guess too, although I did read of a case where a StJude had some other problem (that I can't recall right now) that caused it to also not close properly. I'll look into that and see if I can dig that up again ...

Inconclusive was the report.

Medical imaging often is ...

I was told with a mechanical valve, you can?t do a standard cath.

sort of makes sence to me too ... although I am not sure I've heard that before. It seems logical for a few reasons.

My idea, if time is not a factor is to repair the hiatal hernia and go for another TEE.

wouldn't that be a bit expensive? I guess there is a case for repairing the HH but as I understood it thos things are not 100% success anyway, so you may go through an op only to find it didn't help.

I'd definately seek medical advice on that.

This has all been on the heels of surgery for a torn meniscus and fractures of my spine.

man, you've been through the wringer there!

Would anyone have had experience with panus on a leaflet?

I haven't but there are a few here who have (RobThatsme for instance)

This post on has something on that

http://www.valvereplacement.org/foru...148#post683148

I am told it is may require a reop?

its possible ...

I am not anxious for a tissue valve which I would think would be more prone to panus?

now that you mention pannus and tissue valve I'm not sure that they are prone to that, rob mentions it in that post and that's the first I've hear of it. Clearly it can ...

Thanks for listening.

you're welcome, happy to keep listening and offer what I can.

Best Wishes

 

[djacq]

Thanks Dan and Pellicle. I have tried posting this for a month now without success. I had tried to contact Hank but no response. Not sure why the posting worked today. No, I have been obsessive about warfarin, follow ups with my heart and all medical issues. I was just complacent about being active on VRC. To clarify, the pressure in one of the heart chambers is 80 % and the other chamber 30 %. Guess this isn't good. Cardio has suggested waiting until December and do another echo. Somehow, I am not very trusting of them.

 

[pellicle]

Hi

just dug this out:
http://www.sciencedirect.com/science...35109798003854

The best objective clinical parameter for prediction of thrombus was inadequate anticoagulation, whereas the best TEE parameters were qualitative and quantitative ultrasound intensity of the mass. The presence of either inadequate anticoagulation or a soft mass by TEE improved the predictive power of either parameter alone and was similar to that of ultrasound videointensity ratio.

edit: I see that your coagulation was fine ... but I'll leave this here for discussion / reference

Best Wishes

 

[djacq]

Jeez, I test weekly with In Ratio 2. If I am low, I use Lovenox which is rare. I hope this isn't the case. This is relying on the accuracy of the In Ratio which I am seeing maybe running higher results than it should?? I seem to stay on the high side of over 3.0. My cardio has said you would have to go a long time with a very low INR to get into trouble due to the fast output of the aorta. Thanks for the referral to BobThatsMe, I remember him when I first had my AVR. Couldn't believe what he has been through as connected to his site. Very scary stuff! Kind of wondering why the wait until December to follow this up. Too bad I can't have a successful TEE as that seems to be the definitive test for this problem. I am now worried something may break off either the panus or thrombus. I am seeing my Pulmonary tomorrow and will ask if worsening breathing problems are related to my lungs or if it is my messed up valve. Also, I am now wondering if they mess with your diaphragm during OHS which may be the cause of my breathing problems and very large Hiatal Hernia? Thanks again for locating the above info and leading me to Rob's threads.

 

[pellicle]

Hi

... I seem to stay on the high side of over 3.0..

just for your interest, this graph shows the indicent rates for various INR

So, if you stay in that flat band that hugs the low numbers and that's ideal if you ask me.

 

[pellicle]

PS: I assume "inadequate anticoagulation" means not taking it. There are cases of people not taking it regularly (like for weeks) and just not getting strokes.

I have heard stories from friends in Northern Territory hospitals of people not taking their warfarin for months.

 

[pellicle]

PPS

I found this and wondered if this may be related (valve size)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3425031/

Although the patient was under continuous anticoagulation, thrombosis of the 16 years previously implanted mechanical 31-sized aortic valve prosthesis was diagnosed. Emergency surgery was performed and postoperative course was uneventful. Patients with large size prostheses should have closer anticoagulation monitoring, even after many years of event-free postimplant course.
...
Nevertheless, larger valve size seems to be risk factor for the late thrombembolic event.
...
A decrease in anticoagulation or the absence of anticoagulation, even for short periods, was reported to be a significant risk factor for thrombembolic complication after valve replacement with the St. Jude Medical prosthesis...
...
In the present case, the patient did not discontinue anticoagulation, the INR monitoring was performed by the family doctor every 3 to 4 weeks and was within the target range

so who knows what the swings in INR were in the midst of his 4 weeks ...

out of interest, what was your INR measurement frequency?

 

[Agian]

You take care Donna. I can empathise with the anxiety of not knowing what's going on. Harangue them until you get answers.

Pellicle, I don't get it. You would think a bigger valve would have a smaller chance of getting a clot.

 

[epstns]

You take care Donna. I can empathise with the anxiety of not knowing what's going on. Harangue them until you get answers.

Pellicle, I don't get it. You would think a bigger valve would have a smaller chance of getting a clot.

Maybe the smaller valve area maintains a higher blood flow velocity? This might account for less tissue or material sticking to the valve and its structure.

 

[djacq]

Well Pellicle, that valve is quite a mess! Thank you for your research. I thought my valve was too small at 21. I tested weekly. There were some times I went every two weeks and yes, I was low occasionally, 1.7 or so. I would go on Lovenox. I was told 12 years ago, if I went below 2 to use Lovenox. This brings up a question to me, if I had to use the lab every month what would happen. After fighting to get In Ratio II strips, insurance and now questioning the accuracy of this machine I had wondered if monthly labs would be easier. Is there any further information on the In Ratio machine's accuracy? Alere recently told me they had no problems with it. Thank you Agian, my anxiety is at its max. It doesn't help I just retired from a high pressure job and have too much time to think and no energy to do anything. This heart business seems always to be a waiting game, given my experiences.

 

[pellicle]

Hi

Well Pellicle, that valve is quite a mess!

and then some!

I tested weekly. There were some times I went every two weeks ...

well with that history its hard to claim anticoagulation as an issue. I personally they're grabbing at straws on that too. My surgeon mentioned 2.2 to me as a minimum, I asked him why and he said that he felt it contributed to keeping pannus at bay. So I've stuck with that but have had one reading as low as 1.9 (which I then retested 2 days later and I was 2.1)

I have done an amount of digging and while I've seen some suggestions like in the above article I have found nothing that is rigorous exploring what causes it.

. This brings up a question to me, if I had to use the lab every month what would happen.

well of course none of us can *know* but my gut feeling is there would be nothing different. From what I understand the meters (like my Coaguchek XS) tend to show an INR that is a little different from Labs ... but of course any knowlegable pathologist will tell you that Lab standards vary so which one is "right" noone knows really ... its all rubbery. Looking at this data chart I see that biggest variations in INR reporting between systems occurs at around 2 or 3 ... and even common lab machines (they don't always use your blood draws in the old fashioned way you know) called an i-Stat shows similar variance to a Coaguchek ... sorry I've never researched much on the INRatio as I don't have one ...

and this data from Roche also suggest that the scatter is lower as the INR goes below 2

the only thing I do *know* is that if you'd had no surgery back years ago the outcome would have been worse earlier. I'm really sorry to hear of your issue, and of course wonder about myself ... it is of course a dice roll. It was interesting to learn that pannus can effect tissue valves too.

I'm no expert but in that valve pictured it looked as much like pannus as anything else ... makes me wonder if there are clear cut guidelines for classification of that.

Anyway, in that article they suggested that there were non-valve replacement treatment options available but were not used because that patient was in heart failure. Perhaps such options are available to you?

Best Wishes

 

[pellicle]

Hi

Pellicle, I don't get it. You would think a bigger valve would have a smaller chance of getting a clot.

no idea ... I like Steve's theory ... seems logical.

\?/

heaps of this stuff is mysterious to me still

 

[djacq]

Well, I saw the Pulmonologist. She informed me that secondary pulmonary hypertension is a side effect of this problem. She is working me up for this and CHF. I will see what the results are and try to move up my cardio app't. I feel like a ticking (no pun intended) time bomb. She and my cardio are impressed with the crispness of my valve sounds. Maybe this has all been a bad dream and more definitive testings will reveal all is ok. I can't even imagine a reop.

 

[pellicle]

Well, I saw the Pulmonologist.
...She and my cardio are impressed with the crispness of my valve sounds. Maybe this has all been a bad dream and more definitive testings will reveal all is ok. I can't even imagine a reop.

well that "sounds" positive (since were are doing unintentional puns today) and its good to hear (douh) that its a snappy sound. That implies its not obstruction to me.

Glad that by getting it off your chest (douh) that you are beginning to feel better.

That's what we're here for ...