30 yr F in need of advice for valve selection for AVR and MVR

[SpecialHeart]

Hello fellow valvereplacement family,

I recently found this forum and I am so happy this forum exists! I've been looking for something like this for years but I never found it. I guess it wasn't the right time then. First I would like to share somethings about me. I am a 30 year old female and I live in WA. I was born with mitral and aortic valve regurgitation. In 2002 when I was 18, I had both my valves repaired because I was having severe regurgitation in both valves which was causing me congestive heart failure. When I went into surgery my original goal was tissue valve; however, my surgeon was able to repair the valves instead!

I've been very sick now for a year and I'm in need of both mitral and aortic valve replacements this time. Both my cardiologist and surgeons are leaning more towards the mechanical valves because its a reoperation and its multiple valves. My surgeon also believes that tissue valve replacement for mitral valve can cause stenosis and may deteriorate at a faster pace than the aortic valve.

I didn't meet the right person to have a family with when I was younger and well soon after surgery and when I did meet a great person I was too sick to start a family. I do not have any children and I am not so sure if I want to close the door on not having children right now. I also read some research journals that said pregnancy can damage tissue valves even at early as 2-3 years post surgery (http://content.onlinejacc.org/article.aspx?articleid=1136776).

I am the youngest patient and the only patient that requires valve replacement at a child baring age for my surgeon so its hard for him to advice me. Also I am petite (102 LB. 5 ft 3 in) so my surgeon said that its much more challenging to do tissue valve replacements on someone very small.

I want to do the tissue valve but I really need some advice. I would like to hear about some pros and cons also I would really appreciate it if I can hear from someone close to my age range and my gender so I can know how they decided. I would also like to hear from someone who's had a child after having tissue valve replacement so I can know about complications. I need to make up my mind soon so I would really like all the advice I can get.

Thank you all and sorry for the long explanation.

Love,
K

 

[ski girl]

I had an AVR at 39yo and went with tissue, because I wasn't entirely sure I wanted to 'close that door' either. Eleven months later I had acute endocarditis and an emergency AVR redo with no option but mechanical. The door isn't going to be totally closed if you go mechanical - warfarin/coumadin is a problem but there are ways to manage a mech valve patient through pregnancy. If it was ever relevant to me, I'd find out what is done . . . but someone on here will know more!

Ultimately the most important person here is YOU, not any un-conceived children who may never be conceived anyway (many women have fertility issues!) so my advice would be to do what is most likely to give YOU a successful long-term outcome and from what you say, that's the mechanical option. There is no point in going for a sub-optimal fix which could put your life at risk (or end it) - that's not fair on your partner or these not-here-yet kids.

Besides, there are other ways to get children in your life, the most selfless of which is becoming a foster parent. That way you're not only doing the best thing for your health, you're also having a positive impact on the world. Good luck with the choice - I know it's not an easy one!

 

[SpecialHeart]

I had an AVR at 39yo and went with tissue, because I wasn't entirely sure I wanted to 'close that door' either. Eleven months later I had acute endocarditis and an emergency AVR redo with no option but mechanical. The door isn't going to be totally closed if you go mechanical - warfarin/coumadin is a problem but there are ways to manage a mech valve patient through pregnancy. If it was ever relevant to me, I'd find out what is done . . . but someone on here will know more!

Ultimately the most important person here is YOU, not any un-conceived children who may never be conceived anyway (many women have fertility issues!) so my advice would be to do what is most likely to give YOU a successful long-term outcome and from what you say, that's the mechanical option. There is no point in going for a sub-optimal fix which could put your life at risk (or end it) - that's not fair on your partner or these not-here-yet kids.

Besides, there are other ways to get children in your life, the most selfless of which is becoming a foster parent. That way you're not only doing the best thing for your health, you're also having a positive impact on the world. Good luck with the choice - I know it's not an easy one!

Hi Ski Girl,

Thank you so much for sharing your experience with me. I really appreciate your response. I am sorry to hear that you had an acute endocarditis and had to have an emergency AVR. I'm sure that was tough! I hope you are doing well now.

I completely agree with you on the other ways to have children part and the important part being me. I have been interested in adoption since very young age and I still am; however, as a woman I also want to experience child birth if possible. I wouldn't do it if it was very harmful to me, of course.

With tissue valve, if I could get 10 years before re-operation then it doesn't seem like the worst thing for me. I understand how tough the surgical procedure is because of my previous surgery. My last surgery and recover was very tough! There were bleeding complications and I had to go back in for surgery a day after. To me having another operation later is worth having the option to having a child rather than spend the rest of my life in regret or other emotional issues that may arise from this. Making a personal decision to not have a child because it is not what one wants is different from being told it's not possible to have a child. There's a lot of emotional conflict with that for me at this point.

If after the tissue valve I am not well, I wouldn't consider having a child and I would have to accept that. At this point, my success rate from surgery according to my surgeon is 97% and possibility of of endocarditis is a risk but a small one.

Do you know when you developed the endocarditis? also how was your experience after tissue valve prior to endocarditis? Also, would you mind telling me a little bit about your experience with mechanical valve (ticking sound) and life on coumadin?

The three things that make me not interested in mechanical valves are coumadin, ticking sound and not having to hear my heart beat the natural way and not having the option to experience child birth.

 

[ski girl]

Hi SH-

If I was in your position but KNEW that I'd get 10 years out of a tissue valve(s) which would give me the 'breathing room' to have kids, I'm pretty sure that's what I would do. The tough bit is KNOWING whether you'll have that ten years! But 97% is a really good estimated success rate. The concern will be how easy the redo will be for them considering it will be your third OHS, and whether the risks of repeated OHS are worth it just so you can (maybe) have kids.

I got the endocarditis about 10.5 months after my intiial AVR in 2010, in my case it was a mouth bacteria that would have got poked through my gums (your risk of endocarditis won't be appreciably different with a rubbish native valve, tissue valve, or mech valve, so there's no need for that possibility to impact your decision).

I went into the first AVR in excellent health and quite fit, so I bounced back well. I was knocked around more by the second surgery, but more because I was extremely sick beforehand with the infection (30% chance of living). Two and a bit years on I'm doing really well - paddling, running, and cycling training 10-12 hours a week. The warfarin has had no impact on my life - I've posted in other threads about this - I fall off my mountain bike quite a bit and probably bruise worse now than I would have before, but I don't let warfarin influence what I do. Not sure my cardiologist is overly happy with the mountain biking tho.

The ticking took a while for me to get used to, my valve seems particularly loud partly because I'm small (5'8" 125lbs). It still annoys me but then I have always been irritated by ticking clocks, dripping taps . . . the good news is I'm alive, living my life to the fullest, and am done with being a heart patient.

 

[pellicle]

Hi SpecialHeart

you've got a lot of factors in there, personally I'm going to say firstly:

lean towards what your surgeon advises, I know people here love to seem expert but the reality is we are all patients. If you speak to 100 of us you'll still have tons less experience than you surgeon has already, certainly (assumption here) he has done more ops than that.

Next, as you say there are a number of factors effecting choices and you seem to be across them. I can not help you make the decision but I can help you with some of the issues you are concerned about, for instance coumadin (which is a trade name for the drug warfarin). This is massively (nay, verging on hysterically) over blown in drama. There are people who have problems with reactions to it but they are relatively rare. The main question as I see it is this: are you willing to take it regularly? Now before you answer that consider this next point: you may only get a few years without it (in fact you may be on it any because a tissue valve choice is not a guarantee that you will not need it subsequent to surgery (what I read suggests between 30% and 15% of patients need to be anti-coagulated post surgery even with a tissue valve. A LOT depends on your factors.

That you are having 2 valves done increases these factors.

I advise you to discuss this possibility with your surgeon, ask him frankly.

Next, you're young. Many people here are not, so they seem to fail in thinking of the significance this plays in the process.

Let me say that I had my first AVR when I was 28. I got a homograft (which is a type of tissue valve, but a transplant effectively). I was not really given any 'choice' and being an engineer I allowed the experts (that would be my surgeon) to make the decisions. My valve lasted 20 years.

Now, look around and ask around on this forum and see if you can find anyone who was operated on in their thirties (no, not 50's, no, not late 60's...) who got a tissue valve and got longer than I did.

Next ask those people (the operated on under 40') how many got more than ten years.

At the time of my AVR (first surgery was a 'repair') I was 28, back then twenty years away seemed a lifetime away. Well I had my valve replaced with a mechanical just at the end of 2011. So now I tick and take warfarin.

I can say that managing my INR has been a non event. In to be more specific, it became a non-event when I took over and self managed. Back when I was going to a clinic every 2 weeks (if I was lucky) it was a PITA. My INR was never stable and frequently they wanted me to re test in a week. As soon as I ditched them and went solo it was just smooth sailing. I gotta tell ya ... I hate needles and fortnightly (or more often) vein samples was annoying and interfered with my life. Using my Coaguchek XS takes 5 min on Sat morning when I test and write it up in my spread sheet while having a coffee.

Let me now delve into some facts from the Guidelines on the management of valvular heart disease (version 2012) by The Joint Task Force on the Management of Valvular Heart Disease of the European Society of Cardiology (ESC) and the European Association for Cardio-Thoracic Surgery (EACTS)

You can download it from my google docs here, as I'm unaware of it being published publicly without subscription. If you're into reading stuff about this that's a good start (and so are the references section)

Anyway, I would like to focus here on the summary tables which discuss both choices, Mechanical and Tissue.

Table 17 - Choice of the aortic/mitral prosthesis. In favour of a mechanical prosthesis.

Now look over all those points and see how they sit with you. Will you be able to take your pill daily (do you currently take any other pills? if so then its really a non event); you're definately < 60years; I would hope you have a reasonable life expectancy.


Then factor in the following

Median time to reoperation for Structural Valve Deterioration of homografts is age-dependent and varies from an average of 11 years in a 20-year-old patient to 25 years in a 65-year-old patient.

and I'm of the view that a tissue prosthetic will not last longer than a cryo-preserved homograft will.

Then Table 18 - Choice of the aortic/mitral prosthesis. In favour of a bioprosthesis.

So again ask yourself: is good anticoagulation unlikely (like will you be a problem patient); do you think redo will be unlikely? (doubtful) ; and the last point is not you for sure as you're not > 65

Now, in their bullet points after this they note:

In women who wish to become pregnant, the high risk of thromboembolic complications with a mechanical prosthesis during pregnancy—whatever the anticoagulant regimen used—and the low risk of elective reoperation are incentives to consider a bioprosthesis, despite the rapid occurrence of SVD in this age group.

I underlined that point because its worth noting that "rapid occurrence of Structural Valve Deterioration is high in younger females.

Lastly I'll say that while there are no grantees in life, a redo is a certainty with a tissue, a probability with a mechanical. Those who talk up the ease of redo surgery cite stats which discuss death as the outcomes. There are no studies which talk about the percentages of undesirable but not death outcomes of redo surgeries. How many surgeries have you had now? From each surgery come scar tissue making the redo harder. The move valves you have done (Aortic and and Mitral isn't it?) then the more scar tissue there will be and the more complex (and risky) the redo ops are.

To anyone who says redo's are a walk in the park .. ask them how many they've had and if they've had more than 2 surgeries give their advice greater credence. My first redo was uneventful, my 2nd (3rd surgery) was not.

bottom line
It is your choice, and only you can choose, like the table says "informed patients" ... informed does not mean filled with old-wives tales or mis-information.

You have a big and significant life decision, I recommend you write all these things down on two good sized sheets of paper : one Pro Tissue, the other Pro Mechanical. Go through the points and see what you know and how you feel.

Then discuss this with family

Then armed with that go to the surgeon and discuss the points as you see them.

I wish you all the best with your decision.

 

[njean]

Hello K and welcome to this forum.

I'm so happy that you found us. Valve choice is a very personal choice but you need to get as much information concerning both types so that you can be comfortable with what you decide to go with. Pregnancy can be possible with a mechanical and I can direct you to one member of our community (Orangebrittany)that just gave birth to a child with her mechanical valve. You may want to PM her once you read her posts: http://www.valvereplacement.org/for...0-New-and-looking-for-some-clarity&highlight=

Wishing you the best of luck and please don't hesitate to ask any questions you might have.

BTW: I had a double-valve mechanical implant in 1975 when I was 24 years old....I am 62 years old now and have been on coumadin all these years. It's not the "terror" drug that you may have heard about....but you do need to manage it, respect it and learn how to live your life with it. It's all doable.

 

[Lynlw]

Hello fellow valvereplacement family,

I recently found this forum and I am so happy this forum exists! I've been looking for something like this for years but I never found it. I guess it wasn't the right time then. First I would like to share somethings about me. I am a 30 year old female and I live in WA. I was born with mitral and aortic valve regurgitation. In 2002 when I was 18, I had both my valves repaired because I was having severe regurgitation in both valves which was causing me congestive heart failure. When I went into surgery my original goal was tissue valve; however, my surgeon was able to repair the valves instead!

I've been very sick now for a year and I'm in need of both mitral and aortic valve replacements this time. Both my cardiologist and surgeons are leaning more towards the mechanical valves because its a reoperation and its multiple valves. My surgeon also believes that tissue valve replacement for mitral valve can cause stenosis and may deteriorate at a faster pace than the aortic valve.

I didn't meet the right person to have a family with when I was younger and well soon after surgery and when I did meet a great person I was too sick to start a family. I do not have any children and I am not so sure if I want to close the door on not having children right now. I also read some research journals that said pregnancy can damage tissue valves even at early as 2-3 years post surgery (http://content.onlinejacc.org/article.aspx?articleid=1136776).

I am the youngest patient and the only patient that requires valve replacement at a child baring age for my surgeon so its hard for him to advice me. Also I am petite (102 LB. 5 ft 3 in) so my surgeon said that its much more challenging to do tissue valve replacements on someone very small.

I want to do the tissue valve but I really need some advice. I would like to hear about some pros and cons also I would really appreciate it if I can hear from someone close to my age range and my gender so I can know how they decided. I would also like to hear from someone who's had a child after having tissue valve replacement so I can know about complications. I need to make up my mind soon so I would really like all the advice I can get.

Thank you all and sorry for the long explanation.

Love,
K

Hi I'll write more later, but first welcome. When reading your post It seems having the option to carry your own child, seems very important , IF that is the case almost everyone would reccomend a tissue valve. YES it IS possible to have a good pregnancy and have a healthy baby on mech valve and coumadin. BUT it also has many risk both to he baby and mother, both in birth defects for the baby or misscarages to clots and death to the Mother. The risks of having problems are "probabLy" higher w/ a mech mitral valves , I cant imagine any doctor would say it was safe for 2 mech valves w/ the chances of clotting.

We HAVE had people who had all kinds of valves have children, some did well, but others, even with the newest valves and best doctors in the world treating them almost died and needed valve surgery the day they delivered and babies induced early. IF someone wants to have children w/ a mech valve and coumadin they need to plan very carefully and have a good team in place. There is a increased chance of facial deformitiy in babies w/ Coumadin in the first few months, so many recommend different anticoagulants in the beginning then changing up as pregnancy goes on and need to be sure they can do the proper bloodwork for other drugs.

I DO believe you should discuss your valve choice and possible pregnancy w/ your doctors But wanted to point out someone who has valve surgeries at 18 really SHOULD be going to both cardilogist AND surgeons who specialise in Congenital Heart Defects and Adults with CHD. Since you are your surgeons youngest patient and his concern about your smaller size, my "guess" would be your surgeon mainly operate on adults w/ Acquired heart problems. Since CHD surgeon operate on everyone from newborns up thru adulthood and have the most experience w/ people w/ more complex hearts and multiple surgeries. Adults w/CHD cardiologist also have the latest info on pregnancy w/ different heart defects,

I REALLY suggest you join the forums at the Adults w/ CHD org site also check out all the info there, there is a listing of QUALIFIED centers for CHD patients. http://www.achaheart.org/resources/for-patients/clinic-directory.aspx
Also many of the member there have had 3 or even more surgeries thru out their life There are also many members your age group, since they are all CHD people and many have had surgeies growing up, most would not look for a site like VR.org which is manily people who find out they need a valve replaced when they are adult and havent had OHS before. Also since living w/ CHD can be something you deal with thru out life and ACHD does alot of lobbying and conferences, manny members are active for a there for years after they join. But it seems only a very small group of people who need a valve replaced stay around here (VR) after the first year or so post op, and only come back when they have a problem or questions, so it is hard to get an idea how things are going longer term.

Here is a link to the Bethesda Guidelines on taking care of Adults w/ CHD http://www.achaheart.org/resources/for-patients/achd-care-guidelines.aspx there is a link there to the full text however some points they make are
ACHA ENDORSES THE FINDINGS OF THE AMERICAN COLLEGE OF CARDIOLOGY/AMERICAN HEART ASSOCIATION 2008 GUIDELINES FOR THE MANAGEMENT OF ADULTS WITH CONGENITAL HEART DISEASE, AS WELL AS ACC'S 32ND BETHESDA CONFERENCE REPORT.
ntroduction
Every year, the American College of Cardiology (ACC) convenes a meeting in Bethesda, Maryland, to address an important issue in cardiology. In 2000, the 32nd Bethesda Conference gathered international congenital cardiology experts to address the needs of adults living with heart defects. Below is a summary of these expert's recommendations. You can read the full text here.

Task Force 1: The Changing Profile of Congenital Heart Disease in Adult Life

There are more adults with congenital heart defects than ever before. This is due in part to new and improved surgeries. There are an estimated 750,000 adults with congenital heart disease (CHD) in the United States. More than half need on-going specialized care.
Studies on children show that death rates from CHD surgeries are higher at centers that do not regularly do CHD operations. This is likely to apply to surgeries in adults.

There are many diagnostic tools for CHD. These include catherization, echocardiography, CT scans, and cardiac MRI. One study found that 53% of CHD echocardiograms done at local centers had errors. ACHD patients should get these studies done at centers that specialize in CHD.

 

[bw00]

Hi,
I am a little bit younger than you (18 years old), but I am sort of going through the same thing. I am waiting for an aortic valve, and I am also debating on whether to go with a mechanical valve or not. Right now I am leaning towards a mechanical valve. There are lots of other options to create a family, like adoption or a surrogate mother. It is definitely a tough decision and on your age it might be different to choose. I am already alive on this earth, so I feel like it is more logical to choose for my own health than for a possibility of a life/child that I am not sure I will ever have. I hope this makes sense, English is not my first language but in my head in Dutch it does make sense haha! I am new to the forum as well, and you will find lot of information here! Good luck with your choice! X Berit

 

[tom in MO]

bwOO speaks good wisdom from her young perspective. Do what is best for your future life. Children are a joy but god can bring them to you in many ways other than birth. Yours is a complex situation, Good luck.

 

[SpecialHeart]

my heart story!

my heart story!

I apologize in advance for the really long message.

Thank you all for your responses and advice!

First, I want you all to know how happy I am to meet so many others especially young people with valve problems. I have never met another person in my age range that had these types of issues so I always felt lonely when it came to this. Most people my age especially when I was younger never understood why I was so tired all the time. I’ve been looking for a community that could relate with what I’m going through so I’m happy to find you guys and I’m happy that you are all so willing to share your experience and educate when needed.

I realized that I wasn’t so clear when I said I needed advice. I do NOT need advice on my ‘CHOICE to possibly have children in the future’ because having children is a very personal decision for all and it’s specially tough and sensitive at age 30 because it’s a cross road that all women who do not have children face at this stage. This choice is theirs only to make and what they chose is 100% their decision and 100% true and valid/logical for them.

Also I feel that most have been focusing only on ‘the possibility of a child’ and not on other two things that have equal value as to why I am leaning towards tissue. I will take my time now to tell you my heat story and be more clear about my questions. I truly hope you are not offended by what I’ve said because I realize that it could sound harsh since I can’t write my tone ☹. I understand that everyone responded to me from a very loving place and I appreciate that.

Why I prefer tissue to valve:

1. No ticking sound
2. Significantly less chance of being on Coumadin which means no meds, no needles and no pre-cautions.
3. Choice to have a child (I would not consider having a child with mechanical the risks are not worth it for me)


Reason for why/ my heart story

My parents knew I had a heart disease since I was a 2 month old baby. They assumed it was hole in the heart because I was born in an underdeveloped country that didn’t have the advancements to properly diagnose me. As a child, I had sore throat and cough often and used to turn blue (as a baby). My parents had to be so careful with me so that I would not get sick so I wasn’t allowed to play sports or be active because when I did I became sick easily. At age 7, I became very ill and soon became partially paralyzed. I was not able to walk. My parents had to carry me everywhere (I was this way for almost 2 yrs). My condition wasn’t improving and the paralysis was spreading. The doctors gave me a month and a half to live. My family soon moved to another country that was able to help me. At this point they diagnosed me with mitral valve regurgitation. They treated me for rheumatic fever and with lots of physical therapy, I was able to walk again! Shortly after, we moved to US.

Though I was no longer paralyzed, I still had a lot of heart based symptoms. I was always very tired, chest pain, etc. I also had to take a shot of penicillin in my buttocks once a month regularly to prevent any infection from attacking the heart since I had rheumatic fever before and I had chronic tonsillitis that reoccurred at least once a month. I wasn’t able to live a normal teen life either. At age 18, I was trying to go to college but I was becoming severely symptomatic but the cardiologist I had at the time was not taking my case seriously. My primary care physician became my biggest advocate because my parents were not living in the same state as me. She was very concerned because of my frequent visits to ER with me passing out. She broke her protocols and asked me to see a cardiothoracic surgeon. It was the best thing to happen to my life!

He listened to my heart and immediately knew my condition was very serious. He ordered a TEE and found out that I had severe mitral and aortic valve regurgitation and in addition I was also having congestive heart failure so it was very critical to operate as soon as possible. It was the first time I knew I had two valves leaking. It was also the first time the options for my surgery were presented to me. I had just a few days to decide on what I wanted because my surgery was scheduled less than a half week after seeing the surgeon. I underwent the surgery without my family and close friends. It was the toughest part!

After reading bw00’s comment a memory came to me (after my surgeries (I’ve had a few other) I lost a lot of memories and certain things trigger my memory to come back…it’s weird). I remembered my discussion with my surgeon and my choices. Since I didn’t have any family with me so I had to make the choice I remember choosing mechanical but I was not 100% convinced that it was what I wanted. I was maybe 95% sure. At that time (18yrs), having a child wasn’t important to me because I was going to adopt. I remember my surgeon telling me that I may change my mind about wanting a child later in my life and at that point it might be too late to take this choice back. He was 100% correct because my choice about wanting a biological child changed as I got older. It’s in my 20’s that I met my nieces and friends had children and watched the connections that my friends have with their children and experienced a small part of pregnancy (I’ll explain this later). It is also in the late 20’s and 30’s that the biological clock starts making you feel the need to procreate so strongly even though your logical mind wants something else. I would have never known that then. I was very lucky that my surgeon became a father figure from first meeting. He was very concerned that my parents weren’t there so he took the role to be more than a surgeon and advice me as a father would. He treated me as he would his own child and gave me really great advice and care. Unfortunately he retired a few years after my surgery and I didn’t have the chance to stay in touch.

When I woke up from my surgery I found out that he had repaired my valves instead of replacing them with either mechanical or tissue which he did not think was a possibility prior to surgery. To me, that was the best decision that he had ever made! It was at age 19 (my surgery was a few days before my birthday) that I really started to live freely without any illness or having to go to the doctor as often or having to careful about doing things. I could not believe how great it was to be healthy and well and not having to take any medication or shots or GO TO THE CLINIC! I finally was able to run for the first time in my life without passing out! I was able to join my university ROTC, took martial arts and performed with a dance group along with attending full time university and working two jobs. I felt so good and so free! I really enjoyed my health and I really didn’t miss seeing the doctors or pills or any of that! I was finally free of that! I knew it wouldn’t last forever but I wanted to make the best of it so I did! I lived, I loved like never before and lost like never before and danced like never before and truly cherished and appreciated each day! This lasted for almost 5 years!

Five years after my surgery I became pregnant and it was a happy event but unfortunately I became very sick (life-threatening for me and baby) and lost the baby. This was a huge tragedy that took many years to recover from. My cardiologist told me that I could have a successful pregnancy if I planned ahead and took the right measures but I didn’t know this prior. NOT being able to have this child made me feel very small. Shortly after this I started becoming symptomatic and wasn’t able to do things to the extent that I was able to. I had to start seeing doctors more often and it went down from there until now.

Throughout all these events in my life, I never let life discourage me or felt down about it. I have never felt sorry for my having my illness because it truly made me a very strong person. It also made me appreciate life! I have traveled to many countries and truly lived a life filled with adventures.

The past few years, I spent a lot of time evaluating things that mattered the most and things that I would change. The biggest one I would change is regrets and the thing that mattered the most was living freely (without docs, meds and limitations and just being free!). I didn’t have a traditional life of childhood like most people because the choices were made to me by circumstances (mostly illness). It’s very important to me that I still have a choice to being a biological mother, even if I chose to not do it. I simply don’t want my illness (heart) to make this choice for me. I had to give up doing many things that I wanted to but wasn’t able to because I was ill. As of now I don’t have any resentment from having a chronic illness and I don’t want to start now. I know if I have mechanical valves, it will be the reason why I won’t be able to have the choice to have a child. I’m not prepared to go through that right now. I also realized that our values change at different stages of our life. I changed the most in my 20’s.

Every year, I discovered new things about myself and every year, things that mattered in the past didn’t matter as much later. I’m sure that the child issue may not be an issue later in my life but at this stage it’s important for me to have one ‘normal’ thing in my life. I’ve been spending almost a year now being in the bed because I get too tired to do anything. I haven’t driven in many, many months. I’ve had to post pone medical school twice. I can’t wait to get back to being a ‘normal’ 30 year old. I depend on my significant other to cook for us, take me to appointments, stores, manage the household, etc. This is very straining since I am VERY independent. I’ve always had people feel sorry for me because of my heart and not having children isn’t another thing that I want to add to the list.

Wellness is not just with physical health but emotional, spiritual and mental health play a key role and I recognized that. I spent the past two years preparing for this surgery by working on my self emotionally, mentally and spiritually. I meditate often for clarity. I know that what I want at this stage of my life may not be what I want in my 40’s or 50’s and so on but it’s very important that I live my present in harmony and happiness. Since I’ve had a heart condition since birth, my heart beat and sound has been a very soothing and relaxing thing for me. I started meditating at a very young age (5). In meditation, quieting the mind and focusing on the heart sound is key step so I came to find comfort with the sound of my heart (I’m sure that sounds weird). I really enjoy listening to the way my heart beats and sounds! During my preparation time, I only focused on tissue valve because it’s been my goal to get tissue valve for many years so I didn’t consider the mechanical valve. Especially now that I know what life could be like without being on any medications or getting shots. When I decided on tissue valve, I thought that I had anywhere between 10-15 yrs but I was shocked to find out that its more like 8-12 yrs because of my age (this is what my surgeon told me).

Additionally, me being young and healthy gives me a great advantage along with the success rate of 97% for this surgery. This is not a big risk for me because I’ve had to face higher odds in my past several times and came out successfully because of my positive attitude. I understand that things could go wrong and I could go back to surgery much sooner than anticipated. To me, even having a year of great health to live a free life is worth it. I am not too attached to life and this would change if I have children but as of now my family and my friends support my lifestyle.

I understand that with mechanical valve I don’t have to worry about being a heart patient but I would still be a patient none the less because I would have to take the pills regularly and monitor myself and more needles for the rest of my life. I would like to save that for my next turn if I am lucky to have that. I’m currently working with a therapist to help make my choice so that I have the least amount of emotional damage from this procedure. I am preparing for tissue as a main option but I understand that I may not have a choice and end up with mechanical valve anyway.

I am so sorry for such a long explanation and for all the grammatical errors. Writing isn’t my strength. I prefer science! I was getting frustrated with all the comments about ‘possibility to have a child ’ and ‘different ways to have a child’. I know that I didn’t need to explain myself but I thought it would be nice to share ‘the heart condition’ part of my story. Sometimes it feels like we are going through this tough journey and hardship on our own but I think it’s nice to know others who have similar struggles and stories so help us cope with ours. I understand that most if not all of us had to make tough choices and experience difficulties so hope my story helps.
Also, I feel that the focus is being spent on the wrong thing so I decided to write out exact questions that I need advice on so please no more advice on chose live my life and not of potential child. I’ve heard this tooo many times in my life time and by now you know it’s a sensitive subject!

1. Is there anyone here or do you know anyone in my age range and gender that’s had tissue valve replacement? And if so how long did it take before they started having symptoms/ deterioration?
2. Do anyone know if they offer homograft valves in Washington or anywhere in West cost?
3. Did anyone here have mitral valve replaced with tissue valve? I read that mitral valves become damaged 7 times faster than other tissue valves especially in pregnancy. How long did tissue mitral valve last before reoperation?
4. Is there any way to prevent damage to tissue valve either through diet or lifestyle changes?
5. How is the ticking sound like for those with multiple valves? I’ve heard the sound of mechanical valve on youtube. Is it different from that? My surgeon said that it was and there will be two clicking sounds.
6. I’ve been falling asleep listening to the sound of my heart since I was a kid and my heart beats very loudly. I could always heart my heart beat. I’m a very light sleeper so my hear sound is the only sound that doesn’t wake me. Is it very distracting to get used to the sound of ticking. Also, do any of you have any tools that helped you cope with the sound?

 

[SpecialHeart]

Hi Ski girl,

It seems like you've had some really rough years. I am sorry to hear that but I am happy to know that you are doing well now and that you are happy with your valve! It's great that the coumadin is not an issue for you. After reading many peoples experience, especially yours about coumadin is making me feel more at ease when the time come for me to take it.

 

[SpecialHeart]

Hi Pellicle,

thank you so much for all the research information. I'm a nutrition educator so I too like to be well informed with current research but I don't have access to many data bases from home so I haven't been able to see many. I will carefully review them and add to my huge pro's and cons list !
I would really appreciate it if you could share some research or information for the questions I've posted. You are right that the outcome varies on many different factors and I really appreciate all the time that you spent on giving me such a wonderful and thoughtful response. You said you had your first AVR at 28... did you have bicuspid aortic valve? Also, were you symptomatic for a long time before surgery? Also, Where did you have your homograft valve? did you become symptomatic when you had to have a re-op and if so when did you start becoming symptomatic? I'm sorry for all the questions. I ask about the symptoms a lot because the cardiologists in my case never believed my symptoms to be related to my heart and wrongfully diagnosed me many, many times. By the time they started believing be, I started having severe regurgitations. I just wanted to know if others experience that also.
Thanks again for everything!

 

[SpecialHeart]

Hello K and welcome to this forum.

I'm so happy that you found us. Valve choice is a very personal choice but you need to get as much information concerning both types so that you can be comfortable with what you decide to go with. Pregnancy can be possible with a mechanical and I can direct you to one member of our community (Orangebrittany)that just gave birth to a child with her mechanical valve. You may want to PM her once you read her posts: http://www.valvereplacement.org/for...0-New-and-looking-for-some-clarity&highlight=

Wishing you the best of luck and please don't hesitate to ask any questions you might have.

BTW: I had a double-valve mechanical implant in 1975 when I was 24 years old....I am 62 years old now and have been on coumadin all these years. It's not the "terror" drug that you may have heard about....but you do need to manage it, respect it and learn how to live your life with it. It's all doable.

Hi N Jean,

Thank you so much for your welcome! I really appreciate your sensitivity and advice. It seems like we both have the same valves that are special! Would you mind sharing with me why you had to have your valves replaced at age 24? Was it congenital? I don't know why I have 2 valves that leak and have never met anyone else that had similar experience so I'm curious why this happens. Also, why did you have to have your MV repaired in Dec and AVR in 2006? Was there complications? My surgeon say's mechanical valve should last the rest of my life and theres only 1-3 percent chance that I would ever have to replace it but I've seen a lot of comments in the forum about individuals who had to have their mechanical valves re-done. I am planning for just 3 OHS so I'm counting on the 1-3 % chance is this a wrong estimate?

Thank you so much for all your help! By the way, my cardiologist and surgeon are both strongly against pregnancy with mechanical specially in my case with multiple valve re-op with my health history. I agree with them completely with that decision. If I was to have mechanical valve it wouldn't be something I would do. I'll spend more time with a therapist instead

 

[Lynlw]

Special, Thank you and you really ARE special, not just because of your heart issues.
I am very sorry to hear all that you ent thru, probably more so because my son turned Blue when he was 1 day old and we found out he had so much wrong with his heart he needed surgery at 10 days just so he could get big enough to handle the very complex surgery at 18 months. (still spent about 6 months in and out of the hospital w/ complications post op) but then beween his many heart surgeries so far, he was able to live a very "normal" healthy life and was able to be very active, play sorts and no meds.
I cant imagine how hard it was on your parents too. I'm sorrry it took so long for some one to offer you the surgery you needed so much.

As for your questions
. Is there anyone here or do you know anyone in my age range and gender that’s had tissue valve replacement? And if so how long did it take before they started having symptoms/ deterioration?

There are a few at the Adults with CHD site.

2. Do anyone know if they offer homograft valves in Washington or anywhere in West cost? Any place can get homograph valves, but for the most part, for a few reasons one being they have found other tissue valves last as long or longer now, also they are harder to replace, I dont know of anyone who has had 2. But Quite a few people who have more than 1 valve replaced and others like my son who had a few parts of his heart basically rebuilt and blood reruted as well as many w/ just 1 ventricle and had and will have many surgeries thru out life..

3. Did anyone here have mitral valve replaced with tissue valve? I read that mitral valves become damaged 7 times faster than other tissue valves especially in pregnancy. How long did tissue mitral valve last before reoperation?

4. Is there any way to prevent damage to tissue valve either through diet or lifestyle changes? Not really just live as healthy a life.

5. How is the ticking sound like for those with multiple valves? I’ve heard the sound of mechanical valve on youtube. Is it different from that? My surgeon said that it was and there will be two clicking sounds.

6. I’ve been falling asleep listening to the sound of my heart since I was a kid and my heart beats very loudly. I could always heart my heart beat. I’m a very light sleeper so my hear sound is the only sound that doesn’t wake me. Is it very distracting to get used to the sound of ticking. Also, do any of you have any tools that helped you cope with the sound?


PLEASE check out the forums and clinic directory at the Adults with CHD org site. You will meet so many others closer to your age and older who know alot of what you went thru are going thru.. Many were nott allowed to do things growing up and many had numerous heart surgeries Some to have a child, and some still werent able to. But I really think you will get alot from the members there.

Also have you ever gone to Congenital Heart Doctors? They really will be able to answer many of your questions and try to help you thru a pregnancy if at all possible http://www.achaheart.org/ and as I said Congenital Heart Surgeos operate on very complex and multiple REDO 3 or more OHS several times a week. They know the safest ways to operate on REDOs

 

[SpecialHeart]

Hi Lyn,

your message was extremely insightful for me! i wrote a really long message explaining my story and I'm not sure if you are going to read it but I know that a part of my heart issue is congenital and another part could have been rheumatic fever but I have no way to know unfortunately. I never thought about a cardiologist or cardiothorasic surgeon that specialize in CHD before! I came across this site but didn't see any discussions about valve so I didn't look too closely. I will for sure take a look at it and look for another opinion with a practitioner that specialize in CHD. Thank you so much! I see that you've had 5 OHS! Wow, that must have been very rough! I am so sorry to hear about that. May I ask why you had to have so many in your life time? This also gives me great hope because I always thought that 3 is the maximum OHS a person could have but I'm finding more and more for that not to be true.

Thanks again!

 

[Lynlw]

Hi Lyn,

your message was extremely insightful for me! i wrote a really long message explaining my story and I'm not sure if you are going to read it but I know that a part of my heart issue is congenital and another part could have been rheumatic fever but I have no way to know unfortunately. I never thought about a cardiologist or cardiothorasic surgeon that specialize in CHD before! I came across this site but didn't see any discussions about valve so I didn't look too closely. I will for sure take a look at it and look for another opinion with a practitioner that specialize in CHD. Thank you so much! I see that you've had 5 OHS! Wow, that must have been very rough! I am so sorry to hear about that. May I ask why you had to have so many in your life time? This also gives me great hope because I always thought that 3 is the maximum OHS a person could have but I'm finding more and more for that not to be true.

Thanks again!

I DID read your entire story, I was quite emotional reading about your childhood. I did not have any surgeries, My now 25 yer old son is the one who had so many heart surgeries and will definatly need more. Many of the members at the adults w/ CHD site had a valve or 2 replaced as part of their Congential Heart defect combination

Here is a book you might be interested in, it is free for CHD or people who had heart surgery as a child, w/ lots of discriptions of the different problems and surgeries as well as other helpful info frm another good org than works for CHD research http://childrensheartfoundation.org/publications/its-my-heart

 

[SpecialHeart]

Special, Thank you and you really ARE special, not just because of your heart issues.
I am very sorry to hear all that you ent thru, probably more so because my son turned Blue when he was 1 day old and we found out he had so much wrong with his heart he needed surgery at 10 days just so he could get big enough to handle the very complex surgery at 18 months. (still spent about 6 months in and out of the hospital w/ complications post op) but then beween his many heart surgeries so far, he was able to live a very "normal" healthy life and was able to be very active, play sorts and no meds.
I cant imagine how hard it was on your parents too. I'm sorrry it took so long for some one to offer you the surgery you needed so much.

As for your questions
. Is there anyone here or do you know anyone in my age range and gender that’s had tissue valve replacement? And if so how long did it take before they started having symptoms/ deterioration?

There are a few at the Adults with CHD site.

2. Do anyone know if they offer homograft valves in Washington or anywhere in West cost? Any place can get homograph valves, but for the most part, for a few reasons one being they have found other tissue valves last as long or longer now, also they are harder to replace, I dont know of anyone who has had 2. But Quite a few people who have more than 1 valve replaced and others like my son who had a few parts of his heart basically rebuilt and blood reruted as well as many w/ just 1 ventricle and had and will have many surgeries thru out life..

3. Did anyone here have mitral valve replaced with tissue valve? I read that mitral valves become damaged 7 times faster than other tissue valves especially in pregnancy. How long did tissue mitral valve last before reoperation?

4. Is there any way to prevent damage to tissue valve either through diet or lifestyle changes? Not really just live as healthy a life.

5. How is the ticking sound like for those with multiple valves? I’ve heard the sound of mechanical valve on youtube. Is it different from that? My surgeon said that it was and there will be two clicking sounds.

6. I’ve been falling asleep listening to the sound of my heart since I was a kid and my heart beats very loudly. I could always heart my heart beat. I’m a very light sleeper so my hear sound is the only sound that doesn’t wake me. Is it very distracting to get used to the sound of ticking. Also, do any of you have any tools that helped you cope with the sound?


PLEASE check out the forums and clinic directory at the Adults with CHD org site. You will meet so many others closer to your age and older who know alot of what you went thru are going thru.. Many were nott allowed to do things growing up and many had numerous heart surgeries Some to have a child, and some still werent able to. But I really think you will get alot from the members there.

Also have you ever gone to Congenital Heart Doctors? They really will be able to answer many of your questions and try to help you thru a pregnancy if at all possible http://www.achaheart.org/ and as I said Congenital Heart Surgeos operate on very complex and multiple REDO 3 or more OHS several times a week. They know the safest ways to operate on REDOs

Hi Lyn,

I didn't get to read this message before I responded to you earlier. Wow, your son is really tough!!! More than your son, you and your husband must be really strong individuals because it is not easy to have a child as sick at that age! My parents spent so much time in the hospital with me especial from birth to age 10 was the hardest! They had to completely change not just their lives but my sibling in order to take care of me so I have so much appreciation for parents who endure all this for their children! Its so true that parents love unconditionally for their children!

I am so happy to hear that Justin is healthy now! Its great to have such amazing technologies because if it wasn't for the people like myself and your son would have never have the option to make it to our adulthood! I certainly would have never thought about a CHD specialist if I didn't find this forum or you! I'm so excited that I can join a group and be able to communicate with others who's been through similar things to what I had to!

Thanks a lot!

 

[SpecialHeart]

Hi,
I am a little bit younger than you (18 years old), but I am sort of going through the same thing. I am waiting for an aortic valve, and I am also debating on whether to go with a mechanical valve or not. Right now I am leaning towards a mechanical valve. There are lots of other options to create a family, like adoption or a surrogate mother. It is definitely a tough decision and on your age it might be different to choose. I am already alive on this earth, so I feel like it is more logical to choose for my own health than for a possibility of a life/child that I am not sure I will ever have. I hope this makes sense, English is not my first language but in my head in Dutch it does make sense haha! I am new to the forum as well, and you will find lot of information here! Good luck with your choice! X Berit

Hi bw00,

I am sooooo happy to meet someone your age on this forum!!!!!!!! I had my first OHS at age 18 and I've never met a young person that had valve issues and needed surgery at 18 like you before so this is exciting! With that being said, I am so sorry to hear that you have to go through this at such a young age. Thank you so much for your advice and I wish you lots of luck on on your surgery. I'm not sure if you need any advice from me or my OHS experience but if you do then let me know I can tell you. I thought you might want to know that we experience pain at a higher intensity at age 18 than when you are older (50's, 60's, etc). I'm mentioning this because I was the youngest patient for my surgeon at age 18 and at that time he had been practicing for 47 yrs. He wasn't prepared for the amount I went through. He said it was significantly higher than his older patients. My surgeon now say's the same and is aware that I'm going to need more pain management than his other patients. Its very uncomfortable to walk when you are in so much pain so I think it's important to discuss how your surgeons' planning on controlling your pain. My surgeon now (Im the youngest patient again) say's most of his patients just take pain meds after the 2nd day but that was not at all the case with me. I had a central IV line in my neck and even with that the pain was hard to manage. People experience pain differently anyways so it maybe be completely different for you but I thought you might want to know. Good luck and don't hesitate to ask me for questions if you have any.

 

[SpecialHeart]

I DID read your entire story, I was quite emotional reading about your childhood. I did not have any surgeries, My now 25 yer old son is the one who had so many heart surgeries and will definatly need more. Many of the members at the adults w/ CHD site had a valve or 2 replaced as part of their Congential Heart defect combination

Here is a book you might be interested in, it is free for CHD or people who had heart surgery as a child, w/ lots of discriptions of the different problems and surgeries as well as other helpful info frm another good org than works for CHD research http://childrensheartfoundation.org/publications/its-my-heart

I just read that your other response so I'm sorry he has to go through more surgeries!. That's really tough both for him and your family! I'm going to keep him and your family in my prayers. Sending you and your family lots of love and healing energy! Thank you again for pointing me in the right direction and also for all the love and information!

 

[dornole]

That's some story. I'm very sorry for the loss of your child. I don't know how I would feel if that happened to me, or if I had the grief over that and no other child to turn to (I did lose one early in pregnancy, but it is not the same).

We do have a couple commonalities though. They tell me I must have had rheumatic fever, but I was not aware of it for most of my life (I've always lived in the US where this was NOT common during the 70s and 80s when I was growing up) or that I had any heart issues. It was not until I became pregnant with twins at age 34 (I'd had three other children just fine) and developed congestive heart failure that they discovered I had mitral stenosis. Literally, I found out and was admitted to cardiac at midnight, and was in a different hospital delivering babies by noon the next day. The twins were delivered more than three months early (27 weekers), weighed about 2.5 lbs, and both I and one of them coded during the delivery. The first two years were extremely difficult with their medical problems. I am very grateful and fortunate that we are all three alive and well.

I don't have answers to your specific questions because I am still in the waiting room for valve replacement. In my case, they were able to address the stenosis via a valvuloplasty (balloon). This did leave me with a moderate regurgitation instead, but has been pretty stable for 11 years. Though it won't address regurgitation, you might want to know about that possible treatment for stenosis if you are worried about it developing in the future - easy procedure.

I don't know what I'd choose if I were you. I was just put on tighter followups so I think this decision may be in my near future. For me, fear of my body having an autoimmune response to a tissue valve and promptly destroying it, same as it did to my own, is a big factor toward mechanical. But exactly unlike you, I know I am DONE having children. Doctor's orders, for one thing, and I've got more kids than a sensible person would want anyway, and I don't trust my luck to avoid death or lifelong disability again. I didn't know I was courting a high-risk pregnancy at the time. I thought I was just a healthy, sturdy girl. : ) I still think of myself as one, just not built for birthing babies any more.

If I were in your shoes, I think I'd schedule a consult with a perinatologist. Your cardiologist doesn't seem to know much about your pregnancy questions, but someone who does high risk pregnancies all day long may. He/she can at least speculate on what the risks of various routes might be for you: mech vs. tissue? coumadin issues? chance of getting pregnant quickly while valve is "still good" if that's a goal? risks to you and child if your valves end up stenotic or with regurgitation during the pregnancy? It will all depend on how the replacement goes of course, whether you can still take a child to term safely, but you could get the big picture and might get questions to follow up with your cardiologist on.

I am in the same boat wondering if there's any lifestyle change to prevent tissue damage because I'm not keen to have surgery. I try to eat an anti-inflammatory diet, exercise, and am vigilant about strep . . . but it doesn't seem like anybody knows anything about what helps.

Hopefully someone has exact answers for what you want to know . . . I think people just want to make sure you get some response even if imperfect and let you know someone cares.