Just diagnosed MV regurg, awaiting surgery. What do I need to know?

[alma]

I am 40, have had 5 pregnancies in the last 9 years. I have gotten more and more short of breath in each pregnancy, but obstetrician always said it was normal. Last April it got ridiculous, I just couldn't do anything! I insisted on an echo, and they found severe mitral valve regurgitation and an enlarged left ventricle. 50% ejection fraction (whatever that is). The regurg is projecting anterior, one-sixth at the apex (whatever that means), and the murmur was never detected with a stethoscope. Apparently it's extremely hard to hear.

They took my baby early (she was 37 weeks, and she's doing fine), and now I'm awaiting surgery.

I have been referred to a surgeon, but he is away at a conference for two weeks. I haven't met him. I had an angiogram last week. He has also ordered a transesophogeal echo for next week, and when he returns on the 14th, I will have my consultation.

I have been doing some research but I don't really know what I need to know. I will only meet the surgeon once before the surgery, so I'd really like to have all my questions ready for him. This is all hitting me from out of nowhere.

I'm in Canada. The cardiologist told me they would use a mechanical valve, but didn't even mention tissue valves.

 

[Fundy]

If you haven't done so already, look through the various forum main pages such as this:
http://www.valvereplacement.org/foru...um/pre-surgery
for the stickied topics.
Such as .... what to take to the hospital and ... the pre-surgery consultation-list of questions.

Those two alone should give you a good ballpark at what to ask, to start with
Your valve choice of mechanical vs tissue could be made by yourself if you choose. Also attempting to choose a specific brand as well, which may be even tougher.
But both choices (mechanical or tissue, are a good one in my opinion, just sort of different)
For example at 45, my surgeon said in my instance he would definitely choose mechanical at 35 , tissue at 55, and be 50/50 at my age of 45.

His simple reasoning was at 55 with a tissue you avoid the risks associated with warfarin which were mostly up in the 70+ year range.
He then said I realize a 35 year old would also experience that same risk over 70, but would experience more reoperation risks over their life.
So I could reword that almost as at 55 and 1 or 2 more reops he thinks the warfarin in older age risks are higher.
At 45 and 2 or 3 reops they are about the same.
At 35 and 3 or 4 reops the warfarin risks are outweighed by the reops.
Then again there are surgeons recommending mechanical at age 65 even.

Its a tough subject to look at and make a choice oneself so fast.

If I were you I'd look through the stickies in those forum topics of at least pre-surgery, post-surgery and valve-selection and write down anything you want answers to and then get them from a surgeon and/or cardiologist before surgery. writing them down will help ensure you don't fail to ask them when given the opportunity.

 

[harrietW]

alma hello!! welcome to the site. Sorry to hear of your trouble. Yes the sticky's are great and informative and great guidelines for questions regarding your condition.
You are lucky enough to have a healthy baby Congratulations to you!
I am also waiting for Mitral Valve Replacement as well as Aorta Valve Replacement both in sever regurgitation & stenosis. Severly Enlarged Atrium I'm 55 and will recieve 2 mechanical valves for Christmas. I also live in Canada Southern Alberta. And surgery will be in Calgary.
You are lucky also to see a surgeon so quickly seem you are in good hands.
This forum is amazing really and so much knowledge and great information. It is overwhelming isn't it but l trust and have faith These surgeons are brilliant. I just meet mine last week. I really had no questions to ask mostly because l know he is amazing and saves lives everyday. And any questions l had were based on his discissions. He told me what he was going to do and a tissue valves are out of the question as he put it , for me ! He told me next time l see him we would both be in our pajamas. I think that's pretty typical one meeting pre surgery.
You've been through alot with a new born.
I will have you in my prayers.

 

[honeybunny]

Good for you for insisting on an echo. Fundy and harrietw have excellent advice the pre-surgery message boards. I put together my list of questions for my surgery consult from the suggestions there. Most were answered before I asked but it was good to have a checklist.

I was also hit out of nowhere in May. I'd asked for a stress test because, like you, I'd been having shortness of breath that didn't go away two months after I'd quit smoking. I thought maybe some blockage, but was stunned by the diagnosis. My surgery is tomorrow and I am VERY optimistic going into it, in good part due to folks sharing their stories on this site.

Congratulations on the new little one. I hope you are able to realize some peace of mind in the days to come.

 

[Freddie]

From Saskatoon, Hello and Welcome Alma.
What do you need to know? Well......you won't be able to lift anything for the first 2 weeks or nothing heavier than 5 pounds, even opening the fridge door may be difficult. Reaching above your shoulders will also be difficult not to mention painful. Rest, eat, drink, walk then repeat is usually the standard during recovery. Oh yea, if you have to use stairs it is advise that you don't use your arms to help your yourself 'up', you may want to practice that.

Where in Canada are you?

 

[Adrienne]

Alma, I am just wondering why the cardiologist did not mention a mitral valve repair. They usually try to repair the mitral valve, and it is only if they find that they cannot repair it that they replace it. Be sure you ask the surgeon about that when you meet him.

 

[Zoltania]

Hi Alma,

Adrienne said what I was going to say, namely that you should ask about the possibility of having your mitral valve repaired rather than replaced.

Assuming that the surgeon says you need surgery soon rather than at some indefinite time in the future, you can also ask whether you are a candidate for a minimally invasive incision. Recovery after one of those is easier than after a sternotomy. (Not that I've ever had a sternotomy, but from what I've read on the forums and how good I feel less than eight weeks after my surgery, I'm pretty sure the minimally invasive procedure was easier on me.)

As others have said, the sticky topics are enormously helpful, and so are people's surgery stories in the Post-Surgery forum archive. Those gave me a lot of information and helped minimize surprises.

Good luck, and keep us posted on what's next for you.

 

[dornole]

Familiar story. I had 4 pregnancies, 3rd I got short of breath with coughing at night, and 4th did me in with severe shortness of breath and finally coughing up blood, dx with mitral stenosis due to previously unsuspected rheumatic fever, within hours was in the hospital to have a C-section with 27 week twins. Pregnancy worsens symptoms due to extra blood volume and twins was worse. My OB totally missed it too, it was an urgent care doc who finally sent me to the hospital for an echo. I was lucky that I was able to have a valvuloplasty (balloon procedure, no open heart surgery) as a repair about a month afterward. Unfortunately that is only for stenosis not regurgitation. Everybody's fine by the way.

Mitral valve repair is worth asking about. You might have to get an opinion at a specialty center (in US, exmaples would be Mayo or Cleveland Clinic) to see if that is a possibility for you. Your surgeon or cardiologist should be able to advise you about that and where to go. I now have mitral regurgitation and my cardiologist says it'll be replacement next time, probably in the next 2-3 years statistically speaking. Mitral valve problems are really "specific" and the valve is much more complex than others, so it really will depend on your individual situation what options you do or don't have. Some defects have a fantastic repair rate. Some they won't even attempt. I appear to have the latter but may check with a specialty clinic when the time comes. I'm already at a pretty expert heart center.

Personally, unless something changes, I will be getting a mechanical vs. tissue when the time comes, because:

I'm "young" (48) and young people tend to crud up tissue valves and repairs more quickly. I don't want a redo in my lifetime and it seems like only lasting 7-8 years is alarmingly common for someone my age and 20 years would be the outside I could hope for.

I'm female and we girls also tend to burn up tissue valves faster than men.

It's a mitral valve, ditto, shorter tissue valve life than an aortic.

I have had rheumatic fever, once again a risk factor to rapidly calcify a tissue valve.

And I don't have any counter-reason to choose tissue, like wanting more babies (you can get pregnant with a mechanical, but there are issues) or not wanting to deal with being on warfarin.

SO - I would ask if repair is an option for you and why / why not. If your surgeon would not attempt a repair, ask if there's specialist who might. If you get a repair, what is the risk of it not working and a rapid re-op for replacement? What would be the expected life of the repair? For replacement, I'd ask what valve choice he/she recommends and why.

You do need surgery even if your symptoms are gone post delivery. When the ventricle starts to enlarge you want to put a stop to that. That's one of the things they are monitoring me for in my case along with the ejection fraction and the rest of it.

​Hope this helps.

 

[alma]

duplicate post

 

[alma]

Thanks so much for your replies, everyone!

Adrienne & Zoltania -- Sorry, yes, you're right, he said they would go in with the intent to repair, but prepared to replace it with a mechanical valve.

Freddie -- I am in Ontario. Surgery will be in Kingston.

Honeybunny -- Wow! Best wishes for your recovery! You're probably all finished by now!

HarrietW -- thanks, I will keep you in my prayers, too.

Fundy -- Thank you for the link! I haven't been told about risks of warfarin, other than you might bleed too easily if you have a fall. Is that what you mean?

Dornole - Wow, we do have similar situations. It's hard to go from pregnant and having babies to all of a sudden facing open heart surgery.

I don't know if they do minimally invasive procedures in Canada. I will ask about it if I have a chance. It looks like I may have to get this done on an urgent basis, rather than waiting until the 14th to meet the surgeon!

I saw my cardiologist today and I guess I am getting worse. I can't wait for the surgeon to return from his conference. I will have to go into hospital as an inpatient and get this done. I guess I won't get to meet the surgeon ahead of time to ask questions after all!

But I am grateful for the links. I'm off to check those sticky links now.

 

[harrietW]

alma your in my prayers. You are very lucky that your cardiologist seems to be totally on top of your situation. I hope everything goes smoothly and you are put in the hands if a great surgeon. Please keep us posted when you can on your progress. Things seem to be happening pretty fast Xx

 

[Fundy]

It seems like things are going at warp speed for you on this. You may still get a chance to chat with surgeon beforehand for some questions. I never seen mine until 8pm the night before in my hospital room.

Hopefully you'll have sufficient time to arrange for help raising your kids for a few months. The lifting restrictions I had were a bit longer term than freddie mentioned she had, I think I was told nothing over 5 lbs for two months and then take the third month to progress to what I'd experience at work.

Also if you haven't checked yet, YouTube is a good resource to get a glimpse at what the first few days of recovery in the hospital would be like. Some of the videos may be a little too graphic for some people, and you may not want to know what it looks likeyourself even.

For instance searching HEART VALVE SURGERY RECOVERY at youtube.com , I see three users with usernames of scottsteph16, Jim Sander, and Jayme Montaya that I remember viewing before that I don't think were too hard to watch. I think they were all small clips shot over multiple days if I'm remembering correctly.