Bacterial Endocarditis=Damaged Aortic Valve -36 years old:)

[ajg]

Hey Everyone! I like most of you just need to find someone out there that has been through what I am going through! I am 36 year old female and have been healthy my entire life. I have never been sick and only been in the hospital twice to have my two beautiful boys ages 3 and 1. In September of this year, I began having weird symptoms that led me to several doctors and in the end one amazing doctor finally realized I had a heart murmur and from there sent me to an infectious disease doctor and I was diagnosed with Bacterial Endocarditis. The weird thing is I did not have any pre-existing heart problems and also we have no idea how I got this bacteria. I had not had dental work recently or any of the ways you normally get it. I was at home for a month with a picc line and now I am cleared from the bacteria but it damaged my aortic valve. My valve is leaking moderately to severe. I recently switched cardiologist but my first doctor put me on Lisinopril and gave me hope that I might not have to have surgery. I honestly feel so much better since being on this medicine but I have now switched to a new cardiologist for a lot of different reasons but my new guy immediately looked at my scans and feels like surgery is the next step sooner than later. He said I could just wait and watch it but it was destructed and not getting better. He thinks there is no reason to wait because I am young and was an avid runner so he says I can get back to a normal lifestyle after the surgery. There is also still vegetation on my valve and it could break off and form blood clots. He is recommending a minimally invasive surgery and get a tissue valve. Based on my research I do think this is the route I am going.

All of this being said now I need to make a decision of where to have the surgery and when? I live in Mississippi.
My infectious disease doctor would like for me to go to Cleveland clinic and my cardiologist has recommended a local surgeon who does the surgery. The crazy thing is I feel good. I am working and constantly chasing after my two little ones. I of course can not run or do any strenuous exercise but daily living I am fine so I feel confused about when to do the surgery.
I would love to hear from anyone out there that has had bacterial endocarditis especially if you had a previously healthy heart, had a minimally invasive tissue replacement at Cleveland or anywhere in Mississippi, or any young person about recovery after tissue replacement...running again, having kids,etc. Thank you all so much for any words of wisdom you may have.
Mandy

 

[Greg a]

WELCOME to our OHS family ......it must be new mommy day as we just had a 34 yr young (cant say old) join and start a thread as her children are 3 and 9 weeks http://www.valvereplacement.org/forums/showthread.php?40016-An-Introduction&p=518917#post518917



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[AgilityDog]

We've also got great aortic valve surgeons in Dallas and in Houston, if that's closer, as well as some good ones at UAB in Birmingham.

You CAN get through this, and best to get it done before your heart is damaged further.

I WISH my GP had LISTENED when I said I thought I had a heart problem. Now 3 valves and a pacer/defib. later, I can still run agility with my dog. But I've never been a distance runner, and will never be.

 

[newmitral]

Hello Mandy,

Some of my situation was similar to yours, and some differs. I also had bacterial endocarditis, which took months of testing for the doctors to figure out that my symptoms were actually endocarditis. I also had previously been extremely healthy and to this day we still don't know where I got the infection as I also had no dental work or other typical means of exposure.

In my case, the effected valve was the mitral valve, and the diagnosis was finally made in the hospital where my heart valve gave out the same night the correct diagnosis was finally made. Surgery to replace the valve was the only option, and had to be done essentially immediately. I had the PICC line and 6 weeks of intravenous antibiotics _after_ my valve was replaced.

What concerns me about your post was the indication that you still have vegetation on your valve from the endocarditis. What happened to me was that some of the vegetation broke off from the heart valve and traveled down to the artery in my right leg. Long story short, just this January I had to have surgery on my leg to bypass several aneurysms in the artery of my leg which were caused by the traveling endocarditis bacteria. While such mycotic aneurysms are rare, it is more rare that they get to the leg, and more often will cause problems in the chest or abdomen, in which case the consequences are very life-threatening. The clots can also travel up into the brain where they can cause strokes.

My intent is not to frighten you, but to reinforce the fact that the vegetation may indeed break off and cause problems, even if the bacteria are dead. I would opt for surgery sooner rather than later, after what I've personally been through.

My surgery was performed at Johns Hopkins hospital in Baltimore, Maryland, so I can't offer help regarding the choice of Cleveland Clinic versus Mississippi hospitals.

The decision of tissue versus mechanical valve is also one which is a personal choice. The minimally invasive tissue valve sounds like a good option if they can do it safely with the existing vegetation present. I did not have that option, and went with a mechanical valve.

Best wishes and good luck with whatever choice you make.

 

[Adrienne]

In 2004 I had sub-acute bacterial endocarditis which did not come after any dental procedure or any other procedure. I think my gum bled when we were away, and two weeks later I started having a low-grade fever and horrible headaches as well as zero energy.

I already knew I had mitral regurgitation, but my former cardiologist never had informed me of how bad it was. I found out later it was very severe.

 

[Bill B]

Even if you think you may not need the surgery right away, I would arrange for a surgical consult ASAP, whether it's the Cleveland Clinic, local surgeon and/or a surgeon in Dallas or Houston.. The surgeon(s) will offer his/her opinion about whether you need surgery and how to proceed.

 

[ajg]

Thank you so much for your responses! I needed to hear this so badly today! Telling me your stories helps me so much! I am so thankful to hear from someone else that has had similar experiences...you begin to think you are crazy..you know I had emboli also break off and cause me to experience pain in my foot and shoulder. At least that is what they think it was but luckily it ended up going away. Thanks for opening my eyes to why this surgery is needed now and not later. I think I will at least set up a visit with the surgeon here in MS as soon as possible to hear his thoughts and then go from there.

 

[jpattillo]

Mandy,

I'm in Birmingham, AL and have almost exactly the same situation as you. I discovered my BAV in 1999 and have had it followed since then. In 2010 I contracted endocarditis but fortunately did not get any vegetation on the valve. Still the leak has gone from moderate to severe. I'm having a cardiac MRI tomorrow to confirm the severity of the leak. Once we get that back we will decide if I'm in the window for having the valve replaced.

I'm a runner (Marine Corps Marathon in fall of 2011 and Mercedes 1/2 in Feb. 2012). I've really picked up my mileage and want to keep improving after valve replacement whenever that is. I've also got 3 little ones 6, 4, and almost 2.

I'd be glad to talk to you about surgeons and cardiologists anytime. I've identified three here in Birmingham that I'd be comfortable with. I thought I'd have to go outside the city but I'm ok with who I've identified. I've had some email communication with a cardiologist in Jackson - Dr. Lawrence Creswell. He is an avid runner/triathlete and has a great blog: http://athletesheart.blogspot.com/ There is a surgeon in Birmingham who does the minimally invasive AVR - Dr. Clifton Lewis. He has a great website: http://www.drcliftonlewis.com/index.php He has done a lot of these from what I understand.

 

[ajg]

Jpattilo,
Thank you for the info. I am going to check out both these doctors! So you have been able to run with your valve leaking? That is great! I miss it so bad. Prior to all of this in September, I ran at least 4 days a week usually pushing both boys. I did Chicago marathon and I usually do a half marathon every year. Please keep me updated on your progress too! I am hopefully meeting with Dr. Harris in Jackson this week to get his opinion and then will make decisions from there. Thanks for responding!

 

[Bryan B]

I had bacterial endocarditis in the fall of 2003 and it damaged my valve enough that it needed replacing. I too did not have any dental work done but I had a long bout of bronchitis (2+ months) in the summer of 03. Even after my doctors finally cleared that up I still felt unwell and slowly was getting worse. They finally diagnosed me with endocarditis in late October of 03. My infectious disease doctor confirmed that the bronchitis was the cause of the endocarditis. I had the picc line for 7 weeks and after the Christmas holidays I had a followup with my cardiologist and he said without hesitation that I needed to have my aortic valve replaced. The endocarditis had caused perforations in my valve leaflets and my valve was leaking severely. I was also born with a large VSD that never completely closed, so it was causing one of my aortic leaflets to prolapse and cause mild to moderate leakage before the endocarditis (this is what allowed the bacteria from the bronchitis to set up shop in my valve).

Having said all of that...I think newmitral hit the nail on the head as to why your new cardiologist recommends surgery sooner rather than later. It's the remaining vegetation on your valve that is the cause for alarm (and also probably why your activity has been restricted). Endocarditis has such a high mortality rate because of vegetations breaking loose and causing pulmonary embolisms or strokes. My only advice concerning hospitals is to choose one that does A LOT of valve surgeries.

 

[ajg]

Bryan B.
Thank you so much for commenting! I am seeing a cardiologist here in Mississippi on Tuesday. I am anxious to hear what he has to say! I know I will have a lot more questions for all of you after meeting with him.

 

[markp66]

Welcome! I'm glad your new cardio has recommended surgery- with moderate to severe leakage the heart is constantly working harder and harder. This is clearly not good and the more this goes on the more the heart will get damaged. People can feel fine but this doesn't mean the heart is ok... A tissue valve is a great choice for you especially if you want more children. You should get a good 10 years (although never guaranteed) out of this and potentially longer. Hopefully by then the valve could be replaced through a catheter, again not at all guaranteed.

All things said, as you have had 2 contrasting views it may be worth getting one more opinion. Good luck and keep us all posted.

 

[tommy]

I has SABE age 30 and it took 16 years for "someday" to turn into "now". Your vegetation concerns me as it has others. You have the benefit of being fit and should recover well and quickly. Sorry this is happening to you. Glad you found us. You may also want to visit cardiacathletes.org and share with / learn from a bunch of folks that push activity to the sporting level.

 

[Nupur]

I am so sorry to hear your story. I have been told catherters or IV's are also a source of bacteria. Don't know if you had any during childbirth. I am amazed and scared to hear the stories of people who have had BE without any clear source of the infection. I hope you find a good surgeon and have a successful surgery and recovery. Your boys need you so please be proactive about it even if the docs are not .. best of luck..

 

[queenie]

I am sorry this has happened to you. I have had endocarditis since September. I bumped into a lawn chair on vacation and had a 3 inch skin tear on my shin. To make a long story short I have had two previous aortic valve replacements in the last ten years and the infection caused an abcess around the valve and has to be surgically removed in order to be cured. Unfortunately, I have been turned down by many surgeons because of the severity of my case. The good news is I have found a surgeon and hope to have surgery in the next few weeks. Because this is your first replacement and hopefully your only one, you are going to do great. You are young, healthy and energetic. Get as much information as you can regarding the actual processes of surgery so that you know what to expect. Hang in there.

 

[ajg]

Thanks for all your responses. Sorry I haven't had any updates. I saw a surgeon here in Mississippi. I liked him but did not leave with the clarity I was hoping to get. He agreed that my heart was leaking moderatly to severe but he did not think I had any vegetation left. He acted like surgery was not a rush at all but when I talked about waiting he said that I would have to be on close watch. He said that he would try to fix the valve first and then if not he would recommend a stentless valve? whatever that is? After leaving his office I decided to get another opinion. I am seeing a Cardiologist at Cleveland Clinic next Thursday. This guy is suppose to be a valve specialist so we will see Anyone have great questions I should ask?
By the way...for all you runners out there. I have tried to start running a little and I have felt great My first cardiologist was against me running at all but the surgeon I saw said he did not see why I could not try. I have been taking liprosil since March and I do feel so much better. I will update after my visit!

 

[VegasBAV]

Hi Mandy. I just joined the board and it looks like my experience with endocarditis and then having vegetation on the valve may be similar to yours. I started my own thread about my situation here. I am trying to weigh the risks of surgery vs. the risks of waiting. I am inclined to trust my cardiologist, but I have also found a lot of medical literature saying that vegetation embolisms normally occur before antibiotics or shortly after they are started, and the risk goes way down after the antibiotic therapy is completed. It's my understanding though that the fact that you had vegetation break off before and cause embolism puts you at higher risk of embolism from any remaining vegetation. My vegetation is apparently quite "mobile" and that puts me at higher risk. Hopefully they can confirm by TEE that you have no vegetation left and maybe you will be able to wait.

 

[rib305]

hi Mandy, ive been there twice, i had endorcarditis when i was 16 , i had homograph valve and was lucky it lasted 24 years, with in that time i had my mitral repaired also due to the damage. 2010 i have the homograph replaced with a mechanical ats , the mitral at that stage was great and not touched, to give you the short story , due to having a small aortic valve my surgeon had to do a konno operation to enlarge the valve size the surgery was long and complicated as this was my third operation and i also had a ring suporting my mitral valve so space was a premium, after this opp i never felt 100% and just thought i was taking a bit longer to recover, i also had an abalation done 3 months later to correct af. anyway 5 months later i have diagnosed with endocarditis again and this time it had effected my new aortis valve plus the mitral valve, i was taken into ccu where they pumped me with 8 weeks of antibiotic to try to clear it up but the damage was done and the 4th opp came, while waiting i had 2 small strokes and a stroke in intensive care 3 days after surgery, that week was the tuffest, anyway by the grace of god i pulled thro and for the best part everthing has gone back to normall , all but the odd heartbeat, ive had a small run of af which good old amioderone sorted and mow take multaq and a beta blocker, my surgeon was amazing and pulled of a miricle and it was a miricle this time, so ive 2 mechanical valves now aortic slightly smaller 23mm ats and 29 mitral st judes, my advice get the surgery out the way, as it wont go away.... with regards valve i always wanted tissue, but on reflection if i was coming round the first time and not planning kids go mechanical the warfrin is not that bigger deal really, good luck with your choices, and stay positive