“Is Rheumatic Heart Valve Disease Common?” Asks Frank

By Adam Pick on May 2, 2010

I just received an interesting question from Frank about rheumatic heart disease and heart valve surgery.

 

Surgical Repair Of Mitral Valve Stenosis Due to Rheumatic Fever

 

Frank writes, “Hi Adam – I’m preparing for mitral valve repair surgery due to stenosis caused by rheumatic fever. So far, I have not come across many patients like me. I’m curious… Is rheumatic heart valve disease common? Or, am I the lucky outlier? Thanks, Frank”

After speaking with thousands of patients over the years, my gut response to Frank’s question is that his diagnosis is less common than other patients. However, this is not to say that Frank is alone. For example, if you type “rheumatic” into the search field on the side margin of this blog, you will see several patient stories relating to rheumatic fever.To further evaluate Frank’s question, I just did some quick research about rheumatic fever and heart valve disorders. I found some helpful information from the American Heart Association (AHA).

According to the AHA:

  • Rheumatic fever and rheumatic heart disease killed 3,257 people in the United States in 2006.
  • Modern antibiotic therapy has sharply reduced mortality. In 1950, about 15,000 people in the United States died of these diseases.
  • From 1996 to 2006, the death rate from rheumatic fever/rheumatic heart disease fell 8.3 percent. Actual deaths declined 26.2 percent.

In reviewing these statistics, it appears that modern antibiotics (e.g. penicillin) are protecting patients against the negative impact of Group A Streptococcus, the bacteria that causes rheumatic fever. The benefits of drug therapy are further understood when you consider that patients with rheumatic heart disease are at higher risk for bacterial endocarditis, according to AHA.

 

Bacterial Endocarditis Diagram

 

While I have yet to find any clinical data about the incidence or frequency of heart valve surgery due to rheumatic fever, I hope the information above provides some insight into Frank’s question.

The good news is that the incidence of rheumatic heart disease is declining. Unfortunately, the bad news is that rheumatic fever continues to impact our hearts – especially patients in less developed countries who do not have access to antibiotics.

Keep on tickin!
Adam


Written by Adam Pick
- Patient & Website Founder

Adam Pick, Heart Valve Patient Advocate

Adam Pick is a heart valve patient and author of The Patient's Guide To Heart Valve Surgery. In 2006, Adam founded HeartValveSurgery.com to educate and empower patients. This award-winning website has helped over 10 million people fight heart valve disease. Adam has been featured by the American Heart Association and Medical News Today.

Adam Pick is a heart valve patient and author of The Patient's Guide To Heart Valve Surgery. In 2006, Adam founded HeartValveSurgery.com to educate and empower patients. This award-winning website has helped over 10 million people fight heart valve disease. Adam has been featured by the American Heart Association and Medical News Today.


Victoria says on May 2nd, 2010 at 1:49 pm

These comments piqued my interest. I was born with a bicuspid aortic valve (surgically replaced in 2008) which caused severe aortic stenosis and an ascending aortic aneurysm. I am 61+ years old and female. Curiously, my father had rheumatic fever during or near the time I was conceived. My cardiologist found this interesting, also.



Sharon says on May 2nd, 2010 at 1:55 pm

Frank,I too am facing a mitral valve replacement, due to rheumatic fever as a child. I am frustrated because I don’t know of any one who has had this done and my surgery will coming up shortly. I want to know how their doing and any info on it I can get. Good luck with your surgery and was glad to read your question.



Fran says on May 2nd, 2010 at 2:54 pm

i am one of those people who apparently had rheumatic fever as a child and was never diagnosed. Do remember lots of sore throats. The valve got bad enough that it was replaced with a tissue valve last month at the Cleveland Clinic. The tricuspid valve was also replaced ( a direct correlation to RF). Adam is correct about the disease being pretty much wiped out in this country, but still prevalent in 3rd world countries. Choose your surgeon wisely as I do believe many of them do not have extensive experience on mitral valve surgery.



Jim Holley says on May 2nd, 2010 at 3:30 pm

I had Rhumatic fever as a child, it damaged my aortic valve which they say is unusual to damage aortaic valve. Consequently, over the years I have had my aortic valve replaced 4 times, YES THATS RIGHT 4 times, I am a walking miracle.



ALBERTA GRABOWSKI says on May 2nd, 2010 at 3:47 pm

Dear Sharon,

I just had mitral valve surgery 7 weeks ago. I was told that when I was a child I had rheumatic fever, and that is a strong possiblity that is why I needed the surgery.

Sincerely,
Alberta Grabowski



Jim Holley says on May 2nd, 2010 at 4:31 pm

Sharon, don’t worry, they have some fantastic new valves out now.

I had my first back in 1971, my 4th and last was 1990, it will be 20 years old in november and still working fine.

Oh by the way Sharon, it is a St Jude mechanical valve.



Rita says on May 2nd, 2010 at 9:11 pm

Hi – I too had a mitral valve replaced from having rheumatic fever as a child. My surgery was about 15 months ago and all things considered I am doing well. I am alive and grateful everyday that I am.



Ann Garcia says on May 2nd, 2010 at 9:28 pm

Hi Frank,
In July 2009, I had my mitral valve replaced. Mitral stenosis caused the damage and was most likely due to rheumatic fever. Adam’s book got me through the surgery but I too felt alone.

Since my last name is Hispanic, the doctors thought I was born outside the USA. Also, they were not looking for the problem and did not even hear the murmur until it just about stopped beating. I have finally opened a blog on Adam’s site and am willing to talk more with you about my recovery.

Ann Garcia



Tammy says on May 2nd, 2010 at 9:57 pm

Hi All. It is my understanding that the decline of rheumatic mitral valve disease is due to the treatment with antiobiotics and that that the incidence of rheumatic fever has reduced dramatically over the years. As many of you were, I was never diagnosted as a child but I too have rheumatic valve disease. I feel fortunate that I was diagnosed due to tachycardia unrelated to the mitral valve disease so that my cardiologist diagnosed and could monitor my valve. In 2007 I had a valvuloplasty on my mitral valve and so far it is holding it’s own – I hope that I might be a candidate for another one when my body attacks my valve to the point where the stenosis is bad enough. I continue to be plagued with Afib because of the disease – as I have an enlarged left atrium…and have been on blood thinners for the past couple of years. I am ready for my valve replacement – I know it is enevitable at some point – and have my cardiothoracic surgeon picked out and know I want it done minimially invasive by Dr. Patracek at Vanderbuilt. I can appreciate the shock as I was very suprised when I was diagnosed – but I also know that I’m fortunate as I could have went undiagnosed to the point that I had a heart attack or worse who knows…I too am grateful for everything!



marcelle says on May 2nd, 2010 at 11:51 pm

I’m a 44 year old woman and last year was diagnosed with ‘torrential mitral regurgitation’ that they suspect started as stenosis due to a case of scarlet fever I had when I was 3. My cardiologist says that although it is uncommon in US born and bred children (like myself) ‘it happens sometimes’ – sort of like winning the reverse lottery?
At any rate I had minimally invasive surgery (similar to the one in a recent blog post here) last year to replace my mitral valve with a pig valve and am doing GREAT! I just celebrated the one year anniversary of my surgery by running a half-marathon to raise money for the American Heart Association. I feel exceedingly fortunate to be the beneficiary of such amazing advances in medical technology and am grateful every day to be free to live and move about as a ‘normal’ person.



Rosie says on May 3rd, 2010 at 3:37 am

Frank, I am 64 and had Mitral Valve Replacement with a “Porcine” valve 18 months ago. “Back in the day” sore throats were not treated with antiiotics and my doctor says that from the looks of my Mitral Valve, that I too had rheumatic fever as a child. I had many sore throats and we did not go to the doctor for them. I am doing fine, and I am sure you will also. Do everything you are told to do by your surgeon and cardiologist and join cardiac rehab if at all possible. I still go 3 times a week to keep the heart exercised and work full time. You will be pleased with the miracles these surgeons perform, you will have more energy after your surgery, and life will be much better for you!



David Petro says on May 3rd, 2010 at 7:26 am

I too had to have valves replaced and repaired in 2008. The stenosis was severe and due to the rhumatic fever I had when I was a youngster. That was approximately 50 years ago. I have been monitored for valve problems for some time and was treated with medication untill it was to the point that an aortic valve had to be replaced and the mitral valve repaired. I now feel like a kid again.



Julia says on May 3rd, 2010 at 4:52 pm

My husband had his mitral valve replaced just over a year ago . . . and while we were thinking all along that he was born with MVP, it turns out that he had a tremendous amount of calcification due to rheumatic fever. Did he have MVP + damage from rheumatic fever? or just damge from the rheumatic fever? We are not quite sure, but are very thankful that it got fixed! BTW, the calcification was a factor in his valve being replaced over being repaired. The doctor worked for a long while to repair it, but he said the damage from calcification was too ugly for him to properly repair it.



Cheryl says on May 8th, 2010 at 11:09 am

I have atrial fib due to rheumatic fever as a child. I too am on a blood thinner and a beta blocker and channel blocker. As my valve gets worse I imagine I will need something done. It is almost 2 years of AF and 10 years of super ventricular tachycardia. I almost prefer the AF over the SVT. I, too, am very grateful for the advances in heart surgery and the Lord’s hand on me.



Rajesh Magadum says on May 27th, 2010 at 1:44 am

Hai ,
I am 37 year old Indian ,Patient of rehumatic heart fever at the age of 6months & was diagonised after 9 years . and was continous under treatment of penidure pencillin injection at a gap of 3 weeks to 4 weeks . and the docters warned me about problems after 30 years of age which i am feeling rightnow i.e ,feeling tired ,breathlessness even after small physical work. After diagnosis last year,i was suggested for double valve replacement for ” Severe Calcific Mitral stenosis,severe, AR “. I am confused whom to contact & is there an hospital or Voluntary Service provider in India who can help patients like who are financially poor and could not afford the amount of 3 to 4 lakhs rupees for double valve replacement. I am working in an private technical college which would fetch only the bread for my family which include 2 kids and wife please help me out.



lola says on September 25th, 2010 at 10:42 am

I have had a double by-pass 9 mths. ago.Still in A-fib,seeing a new Dr. who thinks I may have rehumatic valve disease,more procedures to be done to determine. I am terrified of another open heart surgery,or that insurance won’t pay for it.I am 55 year old female,rehumatic fever at age 9,Dr. doesn’t seem to think that is the reason.Need all the info I can get to make an informed decision.Help!



ken says on October 12th, 2010 at 9:33 pm

Hi ,Im a 61 yr old man, I had rf @ age 15, was on sulfa for many yrs, and was told was a 3 over 6 (mitral valve). then at age 55 , I somehow got strep ,that vegetated on the mitral valve, and began having strokes, also 2 seisures, and was finally diagnosed with endocarditis. I needed surgery fast to prevent more strokes. I was in bad shape, but had the mitral valve replaced by a porcine valve +1 bypass.Now all is well,however I have a periferal vision area that is blank from one of the strokes..Its been 6 yrs now, I just had an echo, and the valves are all working fine. I drive and everything, just had to get used to the blind spot. Other than my scar, no-one would ever know what I had gone thru. Hang in there its all amazing!



Priscilla Cantrell says on April 24th, 2011 at 4:53 pm

Is there anyone out there that contracted Rheumatic Fever in the military during World War II and had to have aorta surgery later in life? I am trying to get some help from the VA as my husband passed away two years ago. He had to have his Aorta replaced due to leaking in 1998 (When he was in the Navy 1944 he was hospitalized with Rheumatic Fever, along with several hundred others, for five months) and then, just five years after we were married he was diagnosed with Prostate cancer. He fought prostate cancer for 19 1/2 years before it took him. Would appreciate any feedback about Rheumatic Fever in the military, particularly Navy.
Thank You,



Emmary says on October 23rd, 2011 at 8:17 am

Hi, I’m from the Philippines. I was diagnosed when I was but 11 years old. I couldn’t walk then as my joints are really swollen and small movements causes me tremendous pain. I was on penicillin for a long time but then after a few years I began feeling the symptoms again and I had to have monthly injections for a year, this happened during college. I am 24 now and is starting to feel new symptoms which I’m afraid might be heart valve problems. Chest pains, shortness of breath and weakness. It’s crazy that years ago when I try meeting up with doctors each of them has different methods to cure me. First was tonsillectomy, second was to have injections for five years time. Help.



kamaldeep says on October 27th, 2011 at 10:13 pm

HAI
I AM 36 YEAR OLD AND DUE TO RHEUMATIC FEVER IN MY CHILDHOOD ,I WAS OPERATED .MY TWO VALVE REPLACE THAT IS MITRAL AND AORTIC IN 2007.
NOW I AM PLANNING FOR MARRIAGE IS THERE ANY PRECAUTIONS WHICH I HAVE TO TAKE AFTER MARRIAGE PLEASE SUGGEST.I SHALL BE HIGHLY THANKFUL TO U



Christina says on April 27th, 2013 at 6:47 am

Hi, I was diagnosed a year ago with R. H. V. D. Right after I had my 3rd child. Im only 30 yrs old and i’m scared to death. I wanna live to see all my children grow up. I have no health insurance due to none of them wants to help someone with pre exciting conditions.. I cant get help getting any of the test done and I sure cant afford it..But was told by my doctor that I’ll need a replacement in the future but not sure when because I can’t get the proper test done. My town has no helping programs that will help me because they say my husband makes to much money, which is not true..We have 5 kids between us and a mountain of bills. Good people get never get the help they need.



Lilian Mitei says on February 24th, 2016 at 7:44 pm

Hi Lilian is my name, was diagnosed with rhd 1998, and now the doctors recommend I have to have mitral valve replacement soon, atimes I get so scared but my faith in God keeps me moving on! Will live to hear you experience


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