What a MESS!! In need of some Support!

[Robyn10217]

So how do I start??? Well I have Lupus & RA, that is just the beginging of my problems. Two years ago I was sent to Mayo clinic with severe Aortic & Mitral Valve Reguritation. As well as inflammation, Paricarditis. All of this was caused due to my Lupus, so they had to do surgery immediately. When they opened me up, the plan was to replace both valves, but come to find out that my tricuspid valve was leaking as well and replacing the aortic & mitral would have been just too dangerous, from what they told me. So the out come, aortic mechanical valve, repaired tricuspid, partial paricardiectomy.
So these last three weeks I have been having chest pain, had an echo. I got the results last wednesday. I have severe aortic stenosis & moderate Mitral stenosis... Well and this is what I know so far.. I find out the rest on tuesday. My primary believes that I will need to have surgery, my rhumatologist believes so too... I am upset & scared.. i cant believe I am going down this road again... Could this be from a bad mechanical valve???? Im sure it can be my lupus again... Thank you for listening!!

 

[buncle]

welcome robyn. your over my head on your condition but, smarter folks will be along. wish you the best.

 

[Duff Man]

i find it curious that you have severe aortic stenosis with a mechanical aortic valve. The only thing I can think of is pannus growth in/around the valve. Or maybe impingement, or prosthesis mismatch.

If it were me, I would get a copy of the echo report to understand more about the results. I imagine they would offer their interpretation or findings in a narrative format on some part of the report.

 

[Robyn10217]

Yeah I find it really strange too.. but when I went to see my cardio after my surgery 6 months later she said to me that they put in a small valve.. 11 mm valve... Which makes me think its the cause of the valve.

 

[bdryer]

Wow for me this is somthing new for me, a calcified MAV. I thought the #1 reason for implanting a MAV was that it is not prone to calcification, regardless of size. I believe it is the valve composition that is the prime factor for the cause Of calcification. IE it must be biological. Please keep us informed if you find any additional info regarding your calcified MAV.

 

[Duff Man]

Yeah I find it really strange too.. but when I went to see my cardio after my surgery 6 months later she said to me that they put in a small valve.. 11 mm valve... Which makes me think its the cause of the valve.

I'm not sure if I've heard of a new valve that small before, but that would probably account for some or even most of the stenosis considering the area of a 11mm circle is .95cm2. That valve area is almost "go time" for some people. They might need to do a Konno procedure or something similar that widens the aortic annulus and/or the outflow tract to fit a larger valve.

If you're going to have the annulus widening procedure done, it might be wise to talk to a surgeon that's really experienced with such a procedure. The Mayo clinic seems like a fitting place, and it appears you're already hooked up with them.

 

[Greg a]

Robyn WELCOME to our OHS family

 

[catwoman]

Robyn:

Sorry to see that you're going through all of this.
I'm a little puzzled by mention of an 11mm valve, though. Your post didn't specify what mfr valves you have. However, a search at St. Jude's professional site shows valve sizes of 19 - 29mm, and an article in Circulation, an American Heart Association journal, also shows a 31mm valve. Perhaps another mfr has different sizings?

My youngest sister has lupus & RA, so I can understand what you've had to endure. My sister was DXed with an aortic aneurysm last summer, but it's nowhere needing surgery yet.
Are you on any infusion treatments for the lupus and/or RA? My sis has an infusion about every 4-8 weeks (don't remember the exact frequency or the RX), and it has helped her immensely and given her more stamina.

Please keep us posted.

 

[Bina]

Hello and welcome.
We've never heard of an 11 mm AV...maybe you could re-check that info?
I'm a 5'2" thin person and my mech aortic valve is a St. Jude 21 mm.

 

[Robyn10217]

Gosh you know now I kinda feel stupid... lol I looked at my implant card just to make sure cause after I wrote my blog it didnt sound right to me... size is 19mm... sorry all.. I was 20 when they put in the valve and on invasive steroids when I went into surgery. After surgery I have infusions every week for 4 weeks, although I have a REALLY bad reaction to the chemo it has seemed to help for the last 2 years..

 

[Duff Man]

There might be valves that small but they probably go in to babies

We might be able to speculate more about the stenosis if you post the results of the last echo.

 

[Lily]

So how do I start??? Well I have Lupus & RA, that is just the beginging of my problems. Two years ago I was sent to Mayo clinic with severe Aortic & Mitral Valve Reguritation. As well as inflammation, Paricarditis. All of this was caused due to my Lupus, so they had to do surgery immediately. When they opened me up, the plan was to replace both valves, but come to find out that my tricuspid valve was leaking as well and replacing the aortic & mitral would have been just too dangerous, from what they told me. So the out come, aortic mechanical valve, repaired tricuspid, partial paricardiectomy.
So these last three weeks I have been having chest pain, had an echo. I got the results last wednesday. I have severe aortic stenosis & moderate Mitral stenosis... Well and this is what I know so far.. I find out the rest on tuesday. My primary believes that I will need to have surgery, my rhumatologist believes so too... I am upset & scared.. i cant believe I am going down this road again... Could this be from a bad mechanical valve???? Im sure it can be my lupus again... Thank you for listening!!

I have no answers but much empathy for you Robyn! Have you tried doing any searches here for Lupus? I was wondering also if there were any Lupus sites like this one, where you might also find others who also needed valve replacement? Do your doctors think that it's possible any of the post-OHS medications you've had to take could have contributed to these problems? Is there a genetic test they can do to see if you have an intolerance or significant sensitivity to any of the medications? I know there is one for Coumadin anyway. I also wonder if you or your doctors might be able to email specialists, who are on the cutting edge of Lupus, and present your case to them and see if they have any suggestions. Welcome to the site and post again. Take care

 

[ksduvall]

Hi Robyn,

I also have Lupus and RA along with ITP. I have had aortic stenosis and regurgitation since birth. I just found out this past Tuesday that I need to have valve replacement. I go in for an outpatient TEE tomorrow and will find out more then. I am not on any treatments for my Lupus at this time.

Kelly Duvall

 

[ALCapshaw2]

AH yes, a 19 mm Mechanical Aortic Valve is the smallest size that I am aware of.

If you are 'large' or 'heavy' or possibly even medium size, it is very likely possible that such a small valve
is not capable of supplying sufficient blood flow to meet the needs of your body (i.e. Patient - Prosthesis Mismatch).

If you have Small Arteries, that could be why you were given such a small valve.

At this point, I would think a Second Opinion is worth considering, or at least more definitive testing such as a TransEsophageal Echocardiogram (TEE) which gives a better 'picture' of the valve. Note that the Cleveland Clinic has a 'Second Opinion Service' for around $600 where they will look at the films / CDs / DVDs of your procedures without requiring you to come in for examination.

'AL Capshaw'

 

[Robyn10217]

Thank you all so much!! I am starting to feel much better about this... I leave for my appointment in just a bit here so I am hoping that it will go better then I am thinking..

 

[Lynlw]

Thank you all so much!! I am starting to feel much better about this... I leave for my appointment in just a bit here so I am hoping that it will go better then I am thinking..

I'm sorry to hear about your problems and certainly can understand how sad and frustrated you must feel to have stenosis so soon after your surgery that you hoped wouldn't need redone ever, let alone so soon. Do you know where exactly the stenosis is? The reason I ask, is my son has had problems with building too much scarring or pannus after a few of his replacements. both when he had a patch made out of his own tissue AND another time where his dacron graft (that "should" last forever) was sewn in. Depending where the problem is, some times he has been able to have the stenosis opened with stents, and even had the stents balloon open a couple times, not as a fix but to basically buy time between surgeries.He had a section of his pulmonary artery conduit cut and patched with his own tissue when he was 10, by the time he was 12 it was VERY stenosised, they were able to put off surgery until his was 17 with stents and balloons. When he had his pulm conduit and valve replaced at 17, 2 years later his pressures were very high again because of his conduit being stenosed (in his case almost completely blocked) But since the stenosis was a place where they couldn't use stents, right where the conduit was sewn to his right ventricle, he had to have surgery to replace his conduit (well a section of it). He had really BIG conduits and valves, but I know even a smaller amount of tissue can block smaller valves even easier since it doesn't take much to cover alot of it, compared to a larger area.
Hopefully you get better news and they are able to do some kind of intervention beside another heart surgery. Luckily you go to a very good hospital and since they treat (and are very good),both adults with aquired heart problems and children and adults with Congenital Heart Defects, they probably have experience with many different kinds of issues and can come up with the best plan to help you.