Age 55 and I need a new Aortic Valve, Its decision time. Radiation caused calcium build up. (First Post)

[FishnFool]

Hi All,
Wow at 2 am last night I woke up and thought there has to be a forum for people who need/have had Valve replacement. I am grateful for this site.

So here is my story. At age 28 I was diagnosed with Hodgkin's Disease. After a splenectomy and radiation at age 28 I have been in remission ever since. However the radiation has cause calcification of the aortic valve.

I am active and healthy but about 6 months ago I noticed I was slowing down. I now have aortic stenosis and my valve is failing.
I have been doing research and I have a great Cardiologist here in Nashville TN.

Due to lack of a spleen the consensus is to go with a tissue valve. I am leaning towards the new Edwards INSPIRIS RESILIA Aortic Valve, but also have found the data on the Perimount Bovine valve promising (Much longer track record).

My Mitral valve has some calcium, however no leakage. At first they wanted to replace both valves but after an MRI my Dr says its best to keep an eye on that valve. I guess the original parts are best left in place.

Mechanical is an option but without a spleen the DR thinks management of blood could be an issue.

I am reaching out to Edwards for more data on the INSPIRIS RESILIA Aortic Valve, but if any of you have source or have had this valve put in I would love your feedback.

Surgery is scheduled for Nov. 19 2020

Thanks in advance.

 

[rich01]

It might be too late now, but if possible, I recommend you get a 2nd and maybe a 3rd opinion.

 

[Paleowoman]

Hi @FishnFool - welcome to the forum !

Best to get advice on valves from the cardiac surgeon - haven't you seen yours yet ? I see you are scheduled for surgery on Nov 19th !

The Edwards Inspiris Resilia valve is the latest valve from Edwards, the Perimount Bovine valve is older. I have the Magna Ease valve which was the one before Inspiris Resilia so I was just too early for that one which is supposed to be able to last the longest - there's several forum members who have got it, hopefully one of them will chime in.

 

[dick0236]

Welcome "fishnfool"......you live in a good area to live up to your screen name. You are correct that there are lots of folks who have successfully gone thru this surgery.......and on to a near-normal life afterward. I can't offer much advice about the new Edwards valve.........but I do have one of their earliest valves and it is still clickin' away. There are few heart related topics that you can't find useful input here.

 

[FishnFool]

Hi @FishnFool - welcome to the forum !

Best to get advice on valves from the cardiac surgeon - haven't you seen yours yet ? I see you are scheduled for surgery on Nov 19th !

The Edwards Inspiris Resilia valve is the latest valve from Edwards, the Perimount Bovine valve is older. I have the Magna Ease valve which was the one before Inspiris Resilia so I was just too early for that one which is supposed to be able to last the longest - there's several forum members who have got it, hopefully one of them will chime in.

Yes my Surgeon is at Centennial Heart and he was the one who suggested the new Inspiris Resilia valve but assured me the other valve is also a great choice. I was grateful he did enough tests to realize the other valve was ok.

 

[Paleowoman]

Hi @FishnFool again ! I just discovered that my Magna Ease valve's full name is Perimount Magna Ease Aortic Valve so maybe that’s the Perimount your surgeon was referring to ? Here’s a link to the two latest valves from Edwards: Surgical aortic heart valves | Edwards Lifesciences I think Perimount might be a name given to a family of the Edwards valves, there are earlier ones than the Magna Ease. Both the Perimount Magna Ease valve and the Inspiris Resilia valve are made from bovine pericaridal tissue.

 

[FishnFool]

Yes that is the link. I have a call into Edwards now to speak with the valve specialist to get the latest information on the New Inspiris valve. I feel good about the Perimount as well.

 

[bosshog]

Hi Fishnfool. Your story sounds exactly like mine. At 27 I had hodgkins disease . They also removed my spleen as part of the staging process. I recieved radiation also, I believe 4500 rads total.

At 51, I had my aortic valve replaced due to stenosis. I had a porcine valve put in as I didn't want to deal with warfarin (my Dad was on warfarin and had a lot of problems with it). That was my choice, but knew that down the road it would need replaced again.

By 56, I was starting to feel worse again and slowing down. At 58, I had another valve replacement of my aortic- this time I went with an Onyx valve. At this time they also repaired my mitral valve and did a quadruple bypass.

I am now 60, and feel better than I have for years. The warfarin is no problem, my INR is very well controlled. I wish I would have gone mechanical the first time, although I would have had the other issues anyway. I feel my valve problems were caused by the radiation also, but without it I wouldn't still be here.

 

[pellicle]

Hi there @FishnFool

I just wanted to comment about this:

Mechanical is an option but without a spleen the DR thinks management of blood could be an issue.

the thing that manages the "blood thinners" in your body is your liver, or more exactly the Cytochrome P450 pathway. This is what disposes of warfarin and it is the presence of warfarin which disturbs the process of making the things which cause clotting.

If you were leaning towards one of the modern mechanical valves (such as what I have) then if you wanted a better determination on that I'd go ask an endocrinologist.

I can say that a number of cancer survival patients have attributed good outcomes to their mechanical valve. I assume of course you understand that while you'll need to manage your INR (the measure of your coagulation levels) that the bonus is you will then stand the best chance of never requiring a "re-valve" which of course will be between 10 and 20 years down the track. Now to me I can say that while many people seem to imaging 20 years as being forever if you make it then you'll be 75 and in a state where

1. the gradual (and non linear towards the end) failure of the tissue valve structure will necessitate another surgery
2. in a state of life / health balance where I have seen it tip many over the edge of healthy into frail

Major events like heart surgery are not really ideal in ones late 70's, so it always seems unwise (without mitigating factors) to plan for doing exactly that with a valve choice.

Best Wishes

https://www.sciencedirect.com/topics/medicine-and-dentistry/cytochrome-p450
Abstract
Cytochrome P450 monooxygenases catalyze the oxidation and metabolism of a large number of xenobiotics and endogenous compounds. CYP450 enzymes evolved as the primary defense against xenobiotics and in this process are also responsible for the bioactivation of drugs and toxicants to more reactive intermediates. Cytochrome P450 enzymes are primarily found in liver cells but are also located in cells throughout the body.

 

[pellicle]

@FishnFool

The warfarin is no problem, my INR is very well controlled.

I would say that this quote is repeated dozens if not hundreds of times here. Afraid of the unknown, but somehow unwilling to accept as true people like me (or Dick if I may put myself in the same sentence as him) say time and time again its actually no big deal.

I have written much on my blog about INR management from many angles, but you may like to start with this one

http://cjeastwd.blogspot.com/2014/05/inr-management-goldilocks-dose.html

 

[FishnFool]

I really appreciate you all. I have many questions being answered as I go. With all the information here and other sites I really find it interesting that it all boils down to a personal choice. You make a decision and hope for the best. Its a very complicated topic and in the end MOST people pick their valve not the DRs. Am I reading this right?

 

[Paleowoman]

Hi @FishnFool Most patients are asked to decide whether they want to have a tissue or a mechanical valve, unless there are compelling reasons why they can’t have a choice. BUT it’s then the cardiac surgeon who will decide which model of valve…..it would be no good a patient asking for a particular valve that the surgeon had no experience of implanting. If the surgeon gives you a choice of model then it’s definitley worth asking the surgeon for the pros and cons of each choice, after all we're not cardiac surgeons !

 

[rich01]

Once I found an interventional cardiologist that I had complete faith in, I trusted him to select the right valve.

 

[LondonAndy]

Regarding the spleen issue, this article might be useful for considering a mechanical valve. I have had a form of anaemia since my aortic valve was replaced with a mechanical one six years ago. Apparently in some recipients the valve damages red blood cells, so this may be why your cardiologist is advising against? I take an iron supplement to compensate.

 

[pellicle]

I really appreciate you all. I have many questions being answered as I go.

and I hope raises further questions too ;-)

With all the information here and other sites I really find it interesting that it all boils down to a personal choice.

myself I'd phrase it like this:
Its a choice which comes down to individual facts and factors:

• health related issues
• facts about your actual medical situation
• expected life expectancy from the surgery (IE a 30 yo vs a 60yo)
• your willingness to actually comply with testing and dosing (for this fact alone sways many surgeons towards recommending tissue, because quite simply {ask a pharmacist} most people are hopeless; which will lead you to harm. )

Too often it seems people make emotional decisions, great for some things, stupid for others. (happily engineers build infrastructure according to facts and people decorate their homes according to their feelings)

My view is that if you're someone who can look after yourself and someone who wants to take an active hand in life and health then get a mechanical, if you're someone who wants the doctor to fix it get a tissue and be "surprised" later when it starts to get Structural Valve Degredation. This is known as kicking the can down the road, and its what 90% of humanity will choose.

I now await the regular replies of "its up to you" or "its personal"

Best Wishes

 

[KatherineA]

Sometimes, we must kick the can, especially with underlying or additional medical issues where warfarin or similar drugs are contra indicated. Macular degeneration for example.

Do I want to risk blindness or another surgery, likely a TAVR ?

I choose TAVR.

Be sure your doctor/surgeon/cardiologist knows your medical history. And of course what feel right to you and your surgeon

 

[ottagal]

Hi @FishnFool again ! I just discovered that my Magna Ease valve's full name is Perimount Magna Ease Aortic Valve so maybe that’s the Perimount your surgeon was referring to ? Here’s a link to the two latest valves from Edwards: Surgical aortic heart valves | Edwards Lifesciences I think Perimount might be a name given to a family of the Edwards valves, there are earlier ones than the Magna Ease. Both the Perimount Magna Ease valve and the Inspiris Resilia valve are made from bovine pericaridal tissue.

Hi Paleowoman, I have an Edwards 2700 Perimount Valve and it is not a Magna. I know I am late on responding as this is an older post, but did want to clarify. Many studies were done on this valve and its longevity. My understanding is the Magna is a new iteration.