Awaiting mitral valve replacement surgery

[shann675]

Hello all!

I am a 27 year old female who has congenital mitral valve stenosis. After years and years of check-ups with no issues, it has finally come time to take the plunge to repair/replace my valve. I am seeing a specialist in Boston, MA at Mass General. After months of review, they have said my case is very unique and they actually have not dealt with a patient with my condition at this age, they said either you are a baby when this is taken care of or elderly. They have said they do not know if my valve is even repairable until they open me up and see...so in the case if it is not repairable once they open me up, they will be replacing the valve, and as of now I have chosen a mechanical valve...

I am to schedule the date of the surgery soon, had to speak to my boss of course on what would work best obviously, and it's looking like end of April will be best and my surgeon has agreed to work around my schedule to get me in. Now that I know a time frame of when this is to happen, I am extremely overwhelmed. Not really sure what to think, feel or do...I have been limited to my activities, no lifting weights anymore, which has been hard as I am a crossfit athlete, so I have been on the sideline since November and have unfortunately put on some weight. I have been cleared to do yoga and walk, and as you can imagine, yoga is not my thing, I hate every second of every hour I am in a class, but I still go twice a week because I know I need to.

I've been reading it's important to do some type of yoga or pilates the months before surgery to keep up your conditioning as it would help recovery? Does anyone else know or have any tips I should incorporate this next month or so in preparation? I also read weekly massages to help ease anxiety and stress may help as well, so I am thinking of doing that too...The doctors say I should be up and back to work by 4-6 weeks and feel i should recover fairly quickly because of my young age and my good health, but I am just very fearful of how I will recover, how soon can I get back to doing crossfit and lifting, and have this all behind me?

I can't even get started on the thought of being on blood thinners the rest of my life either, and how this will affect pregnancy, as I have not had children yet...

So now that I have rambled enough on my lunch break, I will send this off and really look forward to any input anyone can offer

Thank you and I am so glad to have found this forum!

Shannon

 

[dornole]

I'm sure the wonderful folks with more experience will reply, but you might want to browse or search some past threads:

--Active Lifestyles thread -- there are definitely some superfit folks in this group who got back into it after surgery. Sorry you're sidelined from your normal routine. I'm sure that's stressful in itself.

--Valve choice thread - if you might want to get pregnant, that's a huge factor in tissue vs. mechanical you will definitely want more info about. Also there's info about how which valve, your age, your gender all affect this choice.

I had mitral stenosis as well (rheumatic) but was able to get by with a valvuloplasty balloon (age 34, 12 years ago) . . . that got rid of the stenosis but now I have regurgitation instead. May be in the repair /replacement boat soon - still monitoring. I have learned so much just from browsing this group. I hope you find it helpful.

 

[DebbyA]

Hi Shannon--welcome! It sounds like you had a lot put on your plate all of a sudden, and are coping very well. Even though you are feeling you're losing fitness, as long as you walk (and don't smoke!) it will help you recover faster. I'd been taking a Pilates-like class for about a year, but the class had a long break so that I missed about 6 weeks before my surgery, and I still feel like it helped. My back is not nearly as sore as after my earlier valve replacement.
To get feedback from the younger and more active, post questions with a more specific title in Active Lifestyles. I sometimes zoom in and read the posts I think I might have useful responses to, and I'm sure others do as well. Also weekends can be slow.
Since Boston's so big, there may be other resources for you. You could start asking at the cardiologists or the hospital about pre-surgery therapy at a rehab center. Or maybe your current fitness center has someone certified to work with cardiac patients. Though it can be frustrating if they confuse cardiac and coronary and start to lecture about cholesterol.

 

[Forrest]

Shann675,

Welcome, and sorry to hear that you are going through this at a younger than average age. On the positive side I can offer the following.

Being younger will most likely help you in your recovery period. You having a history of being into fitness and physical training should help as well. Since you are close to your surgery date the little extra weight you’ve said you put on shouldn’t hurt going in, you lose most of that in the first month of recovery. I am slim and because I had chosen to start a heart healthy diet a few months before surgery and due to anxiety I wasn’t that hungry the weeks before surgery, I went in a few pounds lighter than my normal. Then after surgery I lost another 23 pounds, that’s a lot for a skinny guy to lose. I wish I had known I would lose so much weight post-op, apparently healing the heart tissue and sternum can really take a lot of calories. I did have temporary fluid retention for 2 weeks, plumped up like a sausage around my waist and ankles, but once that subsided I was astonished that no matter how much I ate the weight took me a few months to put back on (even after eating high energy foods and protein shakes). My BMI fell to 19, not good for healing or protecting against colds.

As far as repair vs. replacement goes, I’ve heard that if the valve is repairable they usually will perform a repair over replacement (but that could differ depending on patient circumstances). But it’s good to know that your surgical team will have done these procedures many times before and the operation has come a long ways and is considered to be very successful in most cases.

You mentioned Yoga and walking as pre-surgery exercises. As someone who enjoys hiking, wading rivers and playing sports, I found myself loving (as much as you can while being temporarily out of commission) the post-op rehab of walking. I found it to be very satisfying, each day I would walk more, and was pleased to be able to do so. I marveled in how my body slowly but steadily recovered, walking was my way of saying soon I’ll be back on the horse. It also was mentally therapeutic in that it gave me time to think about things, look at the trees outside etc. (okay, corny), but it was great to go from 10 minute walks to 30 minutes then to one hour walks during recovery.

The posts above are great and there are some very experienced resources on the forum that can give you some more background, including folks in their 20/30’s. Don’t hesitate to ask your doctors/surgeon questions. You are brave and should do fine whatever you choose. Best wishes!

 

[ManiSham]

hi Shannon,

I can imagine your situation because I was 19 when I had my AVR (mechanical). But don't worry I'm sure you will be able to start on your exercise regime once the surgery is done. I actually didn't have any time to get ready for my surgery as such since I had other complications.

As for blood thinners and pregnancy, well I have a three year old daughter now and I had to switch to innohep injections during the pregnancy and didn't have any complications. I've been taking blood thinners (warfarin) for nine years now and it has not interfered in anything that I do. I have a very active lifestyle as well.

Good luck on your surgery and don't worry it's not as bad as you think

 

[shann675]

Hello donrole! Thank you so much for writing! I will definitely have to check out these other threads on here! There is so much to look through I haven't had a chance to dive into all the threads! this will be very helpful though so I can read through more!

When did they discover you had stenosis from rheumatic fever? For many yearst doctors believed mine was rheumatic as well. It wasn't until this December they discovered it was not and that it is congenital. I was scheduled for a balloon agioplasty in December and they cancelled the morning of because they did a TEE again beforehand and the specialists were the ones who noticed it was congenital, so it wouldn't be fixed by the balloon procedure unfortunately. How does the regurgitation affect you now? Hopefully with close monitoring all will remain good for you! Thanks for all your input!

 

[dornole]

It was discovered when I became pregnant with twins. With the increased load on my heart, as the pregnancy advanced I developed symptoms of congestive heart failure (fatigue such that it was hard to go up stairs, and a horrible dry hacking cough especially at night). My OB missed it. Eventually I stated coughing up blood and an urgent care doc sent me to the hospital to check my lungs (I had pulmonary edema from the heart failure) and then for an echo that uncovered the stenosis. I had NO idea there was ANYTHING wrong with my heart prior to that point. I don't remember having rheumatic fever either though I certainly had strep as a kid.

So in my case, it went from "I'm a healthy gal but gee this cough sucks and I have to sleep upright in a chair" to "you have mitral stenosis, pulmonary edema and congestive heart failure" to "you're being admitted to the cardiac unit" to "get the hell out of my hospital, take this ambulance to a different hospital so they can deliver your babies at 27 weeks gestation" in the course of literally 24 hours. Luckily, we all came through that ok in the end though the twins needed a lot of medical care for the first two years. After they were delivered, I had a lot of relief form the heart failure symptoms just from that (and all the Lasix and meds they gave me in ICU for four days). They did the valvuloplasty a month afterward. Everyone was fairly definitive it was rheumatic - I must have had a dozen different residents come by to hear my "classic rheumatic murmur" while I was in ICU. But I will ask if it could be congenital now.

The regurgitation was an unfortunate byproduct of the balloon procedure - opened too wide. However, I don't feel like I am impacted by the regurgitation. I am not as fit as you, and I only walked/hiked before all this happened, but now I run and strength train, portage canoes in the Boundary Waters, have walked a marathon and did a sprint tri (slowly). Oh and YOGA ; ) As you know though, when the echo shows negative changes in the heart, they've got a point when they want to operate even if you are not symptomatic. That is what they've been monitoring annually and now switched to 6 months. I go back in June.

My first dream is to avoid surgery entirely, my second is that after surgery I'll be a running BEAST! (Har) From what I've read your fitness will really help your recovery - one thing people mentioned was the benefits of strength in positioning yourself, getting out of bed etc. without putting strain on your sternum. You won't lose all that and become frail in a couple of months being cut off from training. There are people on here lifting absurdly heavy weights and mountain biking and all kinds of awesome stuff after surgery. They can give you an idea about timeline. They are all on the active lifestyles thread.

The other thing I will pass on from reading the threads (and I stand under correction here) is that if you are thinking of becoming pregnant in the future, that would point strongly to a tissue valve. The downside is that the younger you are, the faster those tend to deteriorate and require a repeat surgery (and they consider 60 as young). And I think I also read that mitral position and being female shorten valve life as well. I feel lucky I managed to have all my kids beforehand. Not an easy choice especially if you don't yet have a partner chosen or know what you might want to do about kids. Fingers crossed that repair is successful because that seems like the ideal situation for your health and for flexibility on that possible childbearing point. You will get through this and hopefully be blessed with many more years to be madly active and do everything you want to do in life!

 

[shann675]

Wow what a journey! It would be nice to avoid surgery of course, specially with kids, but hopefully with the close eye they keep it will help catch anything!

I've too been all over the place with this, and am finally feeling a bit at ease that surgery is finally scheduled, April 18th is the date! I have chosen to go with the mechanical valve now. They have instructed me that I actually should not become pregnant now before I have surgery as the current state of my valve will not be able to withstand the strain of carrying a baby. The Dr. assured me that with careful planning and changing blood thinners that I would be able to become pregnant afterwards. I have decided to learn away from the tissue valve because the Doctor gave me the example of if I am 27 now and get the tissue valve, and say at 31 I wish to have children, that he believes the tissue valve would not be able to withstand the strain on pregnancy either at that point, and that I'd have to have surgery again. So now in my head I think it's really just best to get the mechanical and hope that I do not need another open heart procedure again afterwards, and then just do a pre-planned pregnancy and change blood thinners beforehand. Not my ideal situation when I think of having children, but I guess it's the plan that God dealt me so I just need to go with it.

I am becoming more exhausted each day. It seems my 8 hour work day feels like it's 15 and that I ran sprints all day with how tired I become by the end of the day, so I really am looking forward to getting this done and finally feeling back to myself!

 

[shann675]

Hello! Wow this is great to know! I had yet to find information about what type of blood thinners are out there for someone to become pregnant. How often did you have to do injections? How soon before becoming pregnant did you have to plan and switch blood thinners? I have been thinking about having a consultation with a high risk OBGYN to ask some more questions before surgery. I go April 18th now for the mechanical valve, I'm coming to terms with it better, but am still just so concerned on how it could affect potential pregnancies, as I would like to have children in about 2 years or so.

 

[Duffey]

Hello! Wow this is great to know! I had yet to find information about what type of blood thinners are out there for someone to become pregnant. How often did you have to do injections? How soon before becoming pregnant did you have to plan and switch blood thinners? I have been thinking about having a consultation with a high risk OBGYN to ask some more questions before surgery. I go April 18th now for the mechanical valve, I'm coming to terms with it better, but am still just so concerned on how it could affect potential pregnancies, as I would like to have children in about 2 years or so.

I think your idea of visiting with a high risk OB/GYN prior to replacement is an excellent idea so you'll know exactly where you stand in relation to possible pregnancies with a mechanical valve. ManiSham reports no problems, but there have been other women on the forum who encountered very serious issues. A high risk Ob/Gyn is probably the best person to advise you.

 

[dornole]

Your cardiologist's reasoning makes sense to me and I think agree that consulting a perinatologist is an awesome plan to get his/her expert perspective.

 

[ManiSham]

Hello! Wow this is great to know! I had yet to find information about what type of blood thinners are out there for someone to become pregnant. How often did you have to do injections? How soon before becoming pregnant did you have to plan and switch blood thinners? I have been thinking about having a consultation with a high risk OBGYN to ask some more questions before surgery. I go April 18th now for the mechanical valve, I'm coming to terms with it better, but am still just so concerned on how it could affect potential pregnancies, as I would like to have children in about 2 years or so.

hi Shannon,

I'm sure your Cardiologist will be able to help you with the questions related to blood thinners and pregnancy but it is also good to consult a high risk Gynecologist. It is important to be on alert about getting pregnant in case you have unprotected sex make sure you check early, I actually found out 12days after conceiving through a HCG blood test, so it was very, very early in my pregnancy. The injections are a substitute for the oral medicine warfarin so you need to get the injections on a daily basis(for 9 months), the doctors will show you how to do it at home, I know that in certain instances that you can switch to oral medicine in your second trimester and then start on IV on the third, It all depends on how your doctor plans to manage your pregnancy.

My doctor advised me to get pregnant while the heart is strong and recommended that I do before turning 30, since that is the best time for child bearing as well in general. I was 25 when I had my daughter. Having a mechanical valve doesn't rule out getting pregnant just that it has to be well planned and managed in comparison to a 'normal' pregnancy.

At the moment you need to think about your surgery first and everything will fall into place once you recover

 

[Boston Tiger]

Shannon,

My bet is that you are going to be considered a star in the cardiac ward, since you are young and going in there in good shape, even though you have had to cut back on exercise since November. My best advice for you is to go back and read some of GymGuy's posts from a few years ago. He bounced back remarkably fast after surgery, and I imagine you will too.

April would probably be the time of the year I would pick for surgery up here, since you can pretty much count on nice days for long walks while you are home for your recovery. I was scolded by my visting nurse for going out for walks on June days when it was in the mid-90s and humid.