Anxious About Mitral Valve Replacement.

[user 17111]

Hello All,

I am new to the board and I feel very lucky to have found it! I am facing a mitral valve replacement sometime in Nov2018-Jan2019.

I was told last week that my mitral valve is both leaking and calcified. I was also told that my heart is weak, but it could be due to the valve issue. I don't know all of the particulars of the surgery yet, but I am afraid.

Is there anyone here who has had this surgery who would like to share their story? Or anyone who is knowledgeable about it?

Thanks in Advance..

 

[SumoRunner]

Mine was the aortic valve, but no matter which one, the surgery and recovery is the same. I had a minor stroke while working out in the gym on my 39th birthday from a fleck of calcium that flew off the valve and eventually lodged in the speech center of the brain. My speech was garbled for a couple hours, got to the hospital and all was well within a day.

I had the leaky valve since age 10 and the Drs always said it would give me trouble some day, so it was no big surprise to them.

Anyway, I kept doing whatever I wanted, but now a bit more cautious, and they kept monitoring me at 6 mo. intervals. The valve replacement was scheduled 3 years later, age 42. Recovery took a few weeks. I was back to running slowly at 6 weeks, other workouts later. That was 1991. I have since done things that would curl your hair. Run tens of thousands of miles, hundreds of races, sprints, half-marathons, shot put, triathlons, swim meets, done 250 pushups per day for weeks, you name it. 70 years old now, had to back down due to arthritis issues, but never a heart problem again.

 

[dick0236]

Hi Becky and welcome to the forum. This news scares anyone who is told they need a heart valve replacement. Valves have been replaced since the 1960s and a couple hundred thousand are replaced yearly around the world. Educate yourself so you can understand what your docs tell you. The more you learn and know will help you make the decisions that are best for you.

Personally I had my aortic valve replaced 51 years ago at age 31. Still going strong at 82 and, like SumoRunner says, the valve has interfered little with my life.

 

[pellicle]

Hi and welcome

I am new to the board and I feel very lucky to have found it! I am facing a mitral valve replacement sometime in Nov2018-Jan2019.

...

Is there anyone here who has had this surgery who would like to share their story? Or anyone who is knowledgeable about it?

I think that the majority of us here have had a valve replaced (less are "in the waiting room" I suspect). I've not had a mitral, but an aortic. I've had it replaced three times since I was 10, I'm 54 now and my last one was in 2011. While its not a good idea to make a hobby out of it, its really all going to be fine.

I agree with **** and Sumo above.

You'll be fine. I will put my usual advice which is to read some quotes from the Stoics (great philosophy there) such as Marcus Aurelius:

Be content with what you are, and wish not change; nor dread your last day, nor long for it. ​

...and to remind you of the (fictional but still worthy) "Bene Geserit" litany:

Best Wishes

 

[SumoRunner]

I don't mean to make light of it. This is major surgery and you'll be one sore puppy for the first couple weeks, but from one month onward for the next 30 years you're good for anything.

 

[pellicle]

Hi

I don't mean to make light of it. ...

one thing I've noticed is that pre-surgery everyone focuses on surgery as if there is nothing else in life. Its rare to see someone looking 2 or more years past surgery.

Yet that 2 years will pass (as you so completely know) and surgery will be a dim speck in the rear view mirror.

 

[Zoltania]

Hi Becky,

There is lots of useful information here if you go hunting for it. Look in the "Post Surgery" forum and you'll find many people's stories of their surgery experiences (you can use "story" or experience" as a search term). There is also a "sticky" topic there entitled "After your surgery, what are some of the things that you found out that surprised you", which will also help you learn what to expect.

In the "Pre-Surgery" forum there are sticky topics about what to ask your surgeon and what to take to the hospital.

Fortunately you have plenty of time to get familiar with this prospect before your surgery. Pellicle is right, it's hard to look past the surgery when you haven't had it yet. The unknown is difficult to face. But many people have gone through this successfully, and eventually it becomes just one of the experiences that have contributed to the shape of their lives (and helped save their lives).

For what it's worth, my own surgery was not a valve replacement, just a repair, but my stepfather had mitral valve replacement due to stenosis (he had rheumatic fever as a boy) at age 76. He chose a mechanical valve and is still alive today at age 91, 15 years later.

Don't be shy about coming back and asking questions as you do your research. The people here love to help.

 

[Carnelian]

They replaced my mitral valve with a tissue valve one year ago. See my "guest" post in anniversaries forum. I also had a double bipass done. I was very scared also but had confidence in my surgeon who I researched on the internet. Unless you have other medical problems or issues you should be okay.
Assuming you do not also have lung problems for example. They will ask you loads of questions. AFterward, you will feel very weak and will need a
walker for up to 2 months, blood thinner, and you will stay close to home. You cannot drive. Try to get into a hospital that is busy with heart surgeries and with a rehab area, then follow all their instructions exactly. There is a surgeon evaluation website (don't know its name) where you can look up names and see what the percentage of success they have. You want someone with a 95% success rate or better. I hope this helps. The first few days in ICU you will probably get much attention from the nurses and constant vigilance. I did not go to cardio exercise rehab and am doing okay.

 

[user 17111]

Thanks SumoRunner. Your story sounds so inspirational. I appreciate you sharing it!

Thanks Dick0236! I am working on educating myself as much as I can. Thanks for sharing your story and those stats. It is a relief that the surgery has been around for a while.

Thank you Pellicle. I appreciate your sharing your story so much and thanks for the kind wishes and quotes of support.

Thanks Zoltania. I appreciate your story and for giving me some forum navigation tips. I am sure they will be very helpful.

Thanks Carnelian. I appreciate all of the tips and suggestions. I really don't have much of a choice on doctors as the valve surgeon is the only one in my area - unless I go to Florida or Texas.

__________________________________________________ __________________________________________________ _____

I have spoken with my cardiologist this week and I am not a candidate for the open heart surgery. They want to go in my groin to replace the mitral valve and they want me to have a tissue valve. They have scheduled me for a right and left trans cath next week and another CT scan the week after that.

 

[Carnelian]

I wish now that I had brought books with me to read while in the hospital.
It was boring all day in bed. Good luck.

 

[MartinF]

I had mitral valve replacement 6 years ago. I was in good health with no other issues. My doctor gave me the option of doing minimally invasive surgery or the normal thru the sternum. I chose minimally invasive where he went thru the ribs on my right side. They can't do that if you need a bypass.
My recovery went well but it took a couple months to get my strength back because of blood loss during surgery. I walked daily per their instructions and went to cardio rehab and was running some after about 3 months. I'm able to do normal tasks without much limitation. I can't run as long or as fast as before surgery but I can still get out there.
You will need to work thru your recovery but you can get back to your normal lifestyle. You will do better if you continue an exercise routine and make it part of your lifestyle.

 

[ejc61]

Hello All,

I am new to the board and I feel very lucky to have found it! I am facing a mitral valve replacement sometime in Nov2018-Jan2019.

I was told last week that my mitral valve is both leaking and calcified. I was also told that my heart is weak, but it could be due to the valve issue. I don't know all of the particulars of the surgery yet, but I am afraid.

Is there anyone here who has had this surgery who would like to share their story? Or anyone who is knowledgeable about it?

Thanks in Advance..

I had a mitral valve repair 9
years ago. First surgery ever. It was done robotically. The leaking is why you need the surgery. Calcification could be why a replace instead of just a repair. You will do great. It really wasn’t as bad as it sounds.

 

[deano89]

i was absolutely beside myself with worry all sorts of thoughts going through my head, i had never had any sort of op and here i was facing OHS , mitral valve repair , in my experience the thoughts are much worse than the reality , once i hit Papworth hospital a calmness took over ,the morning of the op my wife came down , i was given a pre med and wheeled down spoke to my surgeon Frank Wells as i was being put under , i was told to think of a nice place then the next i new i was waking in ICU the recovery was relatively easy only real pain was coughing have a pillar and hold it against chest !, climbed stairs at day 3 could of gone home but they didnt get the anticog right for me until day 8 when i finally went home , took me about 12 weeks then i was back fitting kitchens , i had full sternum opened as my surgeon describes minimally invasive as trying to paper a hallway through your letterbox it can be done but would you like the result !, think you can search the mitral valve repair Frank Wells ,he done the op live on channel 4 http://www.channel4.com/explore/surgerylive/surgical1d.html fantastic guy and surgeon , i watched it before i had mine done
i think the op video is actually here :- https://www.channel4.com/now/C4 if your outside UK and it wont let you view you could install a vpn and choose uk location then you should be able to watch it

 

[pellicle]

i was absolutely beside myself with worry all sorts of thoughts going through my head, i had never had any sort of op and here i was facing OHS , mitral valve repair , in my experience the thoughts are much worse than the reality

I think Deano has just totally summarised the experience. So (if Becky you are still following this, or indeed any other lurker) try hard to focus on this.

“We suffer more in imagination than in reality.” – Seneca
https://dailystoic.com/seneca-quotes/

 

[Agian]

my surgeon describes minimally invasive as trying to paper a hallway through your letterbox

That's the Englishest thing I've heard all month LOL

 

[tom in MO]

...You'll be fine. I will put my usual advice which is to read some quotes from the Stoics (great philosophy there) such as Marcus Aurelius:

Be content with what you are, and wish not change; nor dread your last day, nor long for it. ​

Not sure about that quote. We all come to this forum "wishing change" because "what we are" is defective needing a repair or replacement of our valves, thus the name Valve Replacement".

 

[user 17111]

Thanks Carnelian. I appreciate the tip.

Thanks for sharing your story Martin F.

Thanks for the support ejc61. I appreciate it.

Thanks deano89. I am outside the UK, but I will try to watch it.

Thanks Pellicle. I am still watching the thread. I had a couple of health setbacks, but I am trying to move forward.

 

[carolinemc]

Becky Hope you are doing better. Hate setbacks. But hope you have made your choice and get it soon. Waiting is the hardest part of all this. Good luck and keep us posted. Hugs for today.

 

[user 17111]

Hello Carolinemc,

Thanks so much for the kind wishes and the hugs. I am her daughter and I posted and update thread. She had the surgery in Dec. Again I appreciate your wishes.