Still Trying to Decide

[kiddnp]

Hi all! I just found out last week that I have an ascending aortic aneurysm measured at 5.0cm and will need a AVR and possibly aortic arch repair. I am 34 yo and I was completely blindsided (a natural reaction, I'm sure)....but after reading many of the posts on this forum, I feel so much better. I would love ya'lls opinion on my next decision.

The question of which valve to use is weighing heavy on me. The reason is my husband and I have always wanted to have kids. We have been married for 2 years and were trying to conceive when they found the aneurysm. So now I have to choose between the mechanical, which would last longer, but from what my doctor says would be very difficult for pregnancy; or the tissue, which would be better for pregnancy, but does not last as long.

My husband has already told me that if I receive the mechanical valve, he does not want to have kids for the sake of my health. But if I choose the tissue, going through another OHS is scary for me. My doctor said that I would more than likely have to have another surger anyway, but I would prefer to have it much later in life.

Thoughts? Has anyone gone through pregnancy after valve replacement (tissue or mechanical). I'd love your feedback.

Thanks!
Norma

 

[ALCapshaw2]

Welcome Norma !

Yep, you seem to understand the dilemma and tradeoffs for young women with valve disease.

We have some members who have gone through pregnancy with tissue valves (typical valve lifetime around 10 years) and then opted for a mechanical valve after one or two children.

You may want to read the posts from MNmom. Click on "Members List" on the blue line, click on M, and scroll down until you find her screen name, click on it, and then click on "find all posts by MNmom" or "find all threads started by MNmom". You may also want to send her a Private Message (PM) for direct contact.

'AL Capshaw'

 

[Cooker]

Welcome to the zoo .... I wish you the best and as Al said, there are those here that can give you good information

 

[skeptic49]

Welcome to VR, Norma. Best wishes as you go through the process of making some difficult decisions in regard to your valve choice.

Jim

 

[Karlynn]

You do have a good grasp on the information. IMHO, if you want to birth your own bio-children, then tissue is really the only choice. If the birthing experience isn't as important as having your own bio children - then there's gestational surrogacy. We have one member who is going to be having twins in this manner, and another new member who has a son through gestational surrogacy. If your desire is to just be a parent and the child having your genetics isn't a huge factor, then there's adoption.

Have you asked your doctor about pregnancy with your aortic arch issue? Pregnancy can be hard on the heart. There are many women members here who began having problems with our valves due to pregnancies. But then we also have women who have had successful pregnancies after their replacements. I would continue to consult with your Cardio and a high risk OBGYN, since you would be considered high risk after a valve replacement (doesn't mean you'll have problems, just means they'll watch you very closely).

You may have to have another replacement if you get a mechanical valve. But it's not a given. These valves don't wear out, it's a matter of how you body grows around it. I've had mine over 17 years and my cardio just told me it's looking nice and clean. We have members here with mechanicals who've had them much longer than me. And there are a few who've had to have them replaced due to scar tissue. But it isn't outside the realm of possibility that a mechanical for you could last your lifetime.

As it sounds like you know, a tissue valve for someone who's 34 is pretty unknown for how long it will last. But it is the safest way to bear children after valve replacement.

Best wishes!

 

[mmarshall]

I did not have to deal with the pregnacy delima but I chose to have a tissue valve at the age of 31. I was looking at another OHS in my lifetime as well. My thought process was a little different though. I had a very easy experience with my valve replacement even though it took a while to recover. A lot of that had to do with me being young, healthy, and in shape. I figured that I if I had to do it again, I would want to be as healthy and active as possible instead of the possiblility of being not as healthy at an older age. I did not want the possibility of encountering other complications with older age and things that start to break down. But that's just me.

 

[kiddnp]

Thank you all for the welcome and the comments! These are some great insights. I'm still thinking long and hard, though. I'll let you know what I decide. If there are more thoughts/comments, I would love to hear them.

Thanks in advance.
Norma

 

[Lynlw]

I can imagine this is a tough decision, and if I was going to add anything it would be that beside the risks to the Mom, coumadin can be dangerous to the baby and cause certain birth defects. Not all babies get them, but the chances are much higher than in a pregnancy not on anticoagulants. Since they happen very early in the pregnancy, often by the time the Mom realizes she is pregnant it is too late to prevent the defects, so IF you choose Mechanical you have to be very careful and plan your pregnancies to make is as safe as possible for the Mom and baby.

 

[BDMc]

Norma, Welcome to the club! You sound very in tune with the issues you are facing. Karlynn has done her usual great job of outlining your options. You didn't say what the future operation you anticipate is. If you have a condition that will require future surgeries, I'd add that to the in favor of tissue list, as I am no fan of bridging. However if the anticipated future surgery is another valve replacement, I'd add that to the list for mechanicals. My valve was recalled a few months after my OHS. I asked the surgeon if they planned to replace it. He said No, not unless there is a problem. I was pretty freaked out about it, but here I am almost 25 years later, very healthy, and the valve is still doing a great job. Chances are if you go mechanical, you will never need another valve. I strongly recommend a second opinion, just to see what another doc will say. I had to get one for my insurance, and got entirely different advice from the second doctor. I chose to go with the first, and am very happy I did, but it made me feel I'd considered all the options, and made me feel more comfortable with my decision. Hope this helps. All the best, Brian

 

[BigOwl]

Tough choices, Norma--and the usual good advice. I have a question for everyone about the compatibility of the Ross procedure with pregnancy--does anybody know if it's an alternative?

Anyway, something to look into if you're a good candidate and it does anything to solve the future pregnancy issue--and if you live in an area where it's being done.

 

[Tom F.]

I do not recall if you mentioned it, but if you have an ascending aortic aneurysm but your aortic valve is otherwise normal, you may want to look into a valve sparring procedure which will fix the aneurysm, and allow you to keep your aortic valve. This is commonly referred to as a "David" type operation, named after Dr. David in Canada that developed it. I had a David type repair done in 2002 and thus far things are doing fine, my cardio believes that I will be surgery free. I had mine done at age 49. If you Google "valve sparring" you will find a lot of information about it. Good luck.

 

[brunoandbear]

I had a surgeon tell me yesterday that if you are young, a tissue valve will only last about 5 - 10 years. I am not sure if that also applies to repair but he thinks it does. To me, having to replace my valve again in only 5 - 10 years isn't something I would want to do and would rather have a mechanical valve.

 

[neil]

theres a lot of timescales for tissue valves banded about,my cardio and surgeon say between 10 and 15 yrs,who knows,i would hope its more than 5yrs,thats a preety low number,ive spoken to a lot of people with tissue and most have lasted a lot longer than that, but mech supposed to last a life time and yet a local chap had to have his replaced after 6 yrs due to scar tissue,thats why in my opinion its a very very hard choice to make,and we get so much disscussion on here about it,bottom line is your makes your choice and get on with it,the main thing is its a damm sight better valve than the one there took out,whichever you choose

 

[Lynlw]

theres a lot of timescales for tissue valves banded about,my cardio and surgeon say between 10 and 15 yrs,who knows,i would hope its more than 5yrs,thats a preety low number,ive spoken to a lot of people with tissue and most have lasted a lot longer than that, but mech supposed to last a life time and yet a local chap had to have his replaced after 6 yrs due to scar tissue,thats why in my opinion its a very very hard choice to make,and we get so much disscussion on here about it,bottom line is your makes your choice and get on with it,the main thing is its a damm sight better valve than the one there took out,whichever you choose

There isn't alot on it I can find, online, and the surgeons I've talked to about gave numbers close to what your gave, I didn't talk to any doctors that said 5-10 years for the valve and Justin was a teen, who tend to go thru them the quickest (he DID need part of his conduit replaced 2 years later and depending how the valve was determined if they would replace that while they were in there, his valve was perfect )
but alot depends on what you mean by younger Cleveland gives mostly tissue valves now.
here is a couple links to their site about younger valve people http://my.clevelandclinic.org/heart/disorders/valve/pericardialvalvestory.aspx
Biologic Valves: Built to Last
and FWIW this study was done on the older generation valve

also
http://my.clevelandclinic.org/heart/disorders/valve/youngvalve.aspx

Studies on the PERIMOUNT pericardial valve have shown that in a 40-year-old patient, these valves have a 50 percent chance of lasting 15 years or longer, without decline in function. In younger patients, these valves will not last as long, but will still last longer than previous generations of bioprostheses. In older patients they will last longer. The durability of present generation pericardial valves and homografts are very similar

 

[Tom F.]

Just FYI tissue valves and valve repairs are two different things. A tissue valve is not your own living tissue. In a repair they fix your own living tissue. I know that there are no guaranties about any way you approach these things, but my doc believes based on 6years of watching me, that my aortic valve repair will last most or all of my remaining life. I am hopeful.

 

[ChouDoufu]

Studies on the PERIMOUNT pericardial valve have shown that in a 40-year-old patient, these valves have a 50 percent chance of lasting 15 years or longer, without decline in function. In younger patients, these valves will not last as long, but will still last longer than previous generations of bioprostheses. In older patients they will last longer. The durability of present generation pericardial valves and homografts are very similar

the "learn more" link after the above paragraph didn't work for me.
my questions now.....when was this study done? what generation valves
were included? of the other 50 percent, how much decline in function,
when did they need to be replaced and why? how many were due to
causes other than valve degradation? if degradation, how many were
due to calcification?

checking on edwards, their new generation of valves:

.....Now available with ThermaFix advanced tissue process - the only
.....tissue process that removes both major calcium binding sites.*

.....*No clinical data are available which evaluate the long-term impact
.....of the Edwards tissue treatment in patients.

Thermafix was not introduced (in the us) until 2005, so few if any of these
have shown up in published studies.

 

[Lynlw]

the "learn more" link after the above paragraph didn't work for me.
my questions now.....when was this study done? what generation valves
were included? of the other 50 percent, how much decline in function,
when did they need to be replaced and why? how many were due to
causes other than valve degradation? if degradation, how many were
due to calcification?

checking on edwards, their new generation of valves:

.....Now available with ThermaFix advanced tissue process - the only
.....tissue process that removes both major calcium binding sites.*

.....*No clinical data are available which evaluate the long-term impact
.....of the Edwards tissue treatment in patients.


Thermafix was not introduced (in the us) until 2005, so few if any of these
have shown up in published studies.

The first link I posted used to be where the link here went to
from that The Miller Family Heart & Vascular Institute at Cleveland Clinic researchers studied 267 patients who had received a Carpentier-Edwards aortic pericardial valve replacement between 1981 and 1983. The researchers followed up on these patients every year thereafter. Many patients not only got echocardiograms, they filled out questionnaires. Outcome measurements included improvements or declines in the New York Heart Association classification of clinical symptoms and echo measurements to determine performance of the valve and size of the valve opening.

How did they do? According to Dr. Banbury, after 17 years they were doing very well. The majority of patients, even with an increasing age enjoyed good functional status.

this is the study listed in the references
Banbury MK, Cosgrove DM 3rd, Thomas JD, Blackstone EH, Rajeswaran J, Okies JE, Frater RM. Hemodynamic stability during 17 years of the Carpentier-Edwards aortic pericardial bioprosthesis. Ann Thorac Surg . 2002 May;73(5):1460-5

 

[ShezaGirlie]

Hi Norma -- I see you're having your surgery day after tomorrow in San Antonio. I also had mine there, but in 1999. Best wishes to you..