Question about Rheumatic Fever.

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osita70

Hello,

Do most people who have had rheumatic fever end up having heart vavle problems? Do these problems usually require surgery? My husband was just told two days ago that he needs to have one mitral valve and one aortic valve replaced ASAP. He had rheumatic fever as a child and I guess he never knew that it had caused so many problems. We are going for a second opinion today, but from what I have read of this doctor, he errs against surgery. We don't want to just jump into anything, but if the problem will only get worse then why wait?
Also, can anyone recommend a good doctor in Los Angeles?

Thanks,
Lauren
 
Hi Lauren-

Rheumatic fever attacks heart valves among other things. Most of the time, the damage doesn't appear right away, but several years down the road.

My husband had rheumatic fever as a teen, he's 71 years old now. He had his aortic valve replaced 25 years ago, and his mitral valve replaced in 1999.

It is a devastating disease. There are many folks on this site who have had rheumatic fever.

It's good to get a second opinion, but if your second opinion says that he needs surgery, then it is best to get it done before other damage can occur to the heart. If you wait too long, there are changes that can happen which will be permanent in nature.

Wishing you both all the best and welcome to this wonderful site.

We're all here to help you with any questions.
 
Hi Lauren,

Sorry to hear about your husbands condition. I'm 20 years old and had rheumatic fever when I was 12. It went misdiagnosed and it started damaging my heart and then I went to a dentist and didn't premedicate because I didn't know I had rheumatic fever and I developed bacterial endocarditis and that's what really ate away at my heart. Did your husband always premedicate before he went to the dentist or any other invasive procedures?? Again, I'm sorry to hear about your husbands problems but remember you're not alone and many of us here have had the unfortunate experience of rheumatic fever and it's horrible affects to one's heart. Take care and come back often. Please keep us updated.
 
Hi Lauren, I'm sorry to hear of your husbands heart problems.

I'm sort of different. I'm 29 years old and didn't know that I even had Rheumatic Fever as a child (nor did my mom). When I went to the doctor because I wasn't feeling well, I was told that I must have had it because I have valve damage that is consistant with RF. It seems as though valve damage is a pretty common thing.

I hope all is well with you and your husband.

Take Care.
 
Since I had a heart murmur from childhood, every Doctor always asked if I had Rheumatic Fever...answer always..I don't know. My daughter also has valve problems and we were never aware of Rheumatic Fever for her either. It is a culprit in valve problems and probably misdiagnosed often.

Once the problem is known, it is very important to have a competent Cardiologist who checks it routinely and an echo is done to assess changes. This tells them when surgery needs to be done.

Make sure you have a Doc that will discuss all of the options..it's so important.

Best Regards,

Zipper/Joan
 
Hello!

My husband also had rhuematic fever...age 18. He was hospitalized for about four weeks, and then recover was an additional 3 months. He was told at that time that one valve was damaged. He had two valves replaced in October of 2001. Post surgery, we';ve been told that not his tricuspid valve has a severe leak as well.....all from strep. However, he had two brothers who also had rheumatic fever at the same time. (Medical history?) One of them had St. Vitus Dance, which attacks the nervous system, and not the joints. No heart damage. The other younger brother had "regular" rheumatic fever, and is about 5 years younger. No heart problems at all. So there you have it! Oops, they also were pretty sure a fourth brother had rheumatic fever as well, no murmer afterwards, and he died in a car accident at age 27.

If the second opinion recommends surgery, please go for it. And, there will be lots and lots of folks here on this board to support you. We believe my husband was a bit late in getting his done, and went into congestive heart failure and atrial fibrillation.
The very best of wishes to you....it is a tough journey, but do-able.

Marybeth
 
Hi Lauren, welcome to the site! I guess I had rhuematic fever back when I was 6. I was never diagnosed with it, but they think that's what caused my heart trouble, because back in 1998, after I had my first son, Ian, I got Sydenham's Chorea(also called St. Vitus' dance) and I understand why they call it St. Vitus' dance now! The neurotransmitters in my brain were sending out messages to my muscles that I hadn't told it to send out. It was horrible, I couldn't eat, sleep, talk, sit still, I would black out, and have seizures. It went away on it's own. A little over two years later, I found out about my mitral stenosis. I was actually pregnant with my second son, Erik. I ended up in a coma in level 4-5 CHF, and my heart was very enlarged. I am actually thinking about studying RF because my grandmother died of the same disease when she was 32. She had all the same symptoms I had, but back then they didn't have valvereplacements. I would actually recommend getting the second opinion just for peice of mind. I referred to a website, www.mayoclinic.com for info on RF. YOur husband's doc should be able to give you information as well. Take care, and good luck!

By way, you can always e-mail me if you want...my address is
[email protected].
 
Thank you all for your replies (more)

Thank you all for your replies (more)

We did go for a second opinion yesterday. We didn't tell the second cardiologist what the diagnosis of the first cardiologist or the cardiac surgeon was, and after he looked at ll the tests that have been done and did his own examination, he concluded also that valve replacement surgery should be done as soon as possible. My husband had an echo done six months ago and one a couple of weeks ago and in that six month period there has been significant change. So, he is having an angiogram done this week and they are scheduling the surgery.


All the doctors think everything will go fine as he is relatively young (40) and in good health. Hopefully that 95% success rate will be a little higher in our case.

I had never heard of St. Vitus' Dance before, and while I don't think my husband ever had that, he does have epilepsy, which now I am thinking might have been caused by the RF too. He didn't start having seizures though until he was in his twenties while he had RF as a young child.

Thanks again for all the encouragement and information you all posted. I am sure I will be here asking questions again as more arise.

Lauren
 
the silver lining

the silver lining

I know this sounds odd...be glad it only hit one organ! My mother had rf when pregnant. I was born with eye, ear, heart, and brain damage. Surgery today is a snap compaired to the hell they use to put us through! My first surgery was in 1963 and 69 before the heart lung machine.
 
Lauren, I had RF when I was 6, but I didn't get St.Vitus' dance until I was 20 years old. Perhaps you should check that out with his pcp? I was on kolonopin for 3 months.
 
Rheumatic Fever

Rheumatic Fever

Lauren,

I too had RF when I was 6, 14 and 17. It has a hx of repeating itself. The only good thing, It kept me out of Viet Nam !! I've know for 40 years that someday, I'd need a "valve job." That day was Jan 31st. I had my Aortic valve replaced w/ a Medtronic Porcine valve 27mm. While there, the surgeon discovered the aortic root was near rupturing. Thank God...I dodged a bullet there....WOW. One usually does not survive an aortic anyeurism.(sp).The surgery is not that difficult anymore...a common procedure now adays. There are many folks here that have been to the "Other Side of Mtn." Ask any questions you may have...we love to share our experiences! I'm glad I had VR.com to see me though it!

Good Luck

James W.
AVR - Medronic Porcine 27mm w/ full Root Replacement
Rheumatic Fever
St Als RMC - Boise-Id
Dr Forbes - Dr Marks
 
Welcome & Rheumatic Fever

Welcome & Rheumatic Fever

Rheumatic fever has been the reason many of us have had to get our valves replaced. I had to get my aortic valve replaced because of that very reason.

They should be able to tell you how long it will be before it's absolutely essential. The longer you wait, the worse it gets, and the longer it takes to recover. Do listen with an open mind to what they say.

You're in our prayers.

RON P.
 
Welcome to the site

Welcome to the site

Hi Lauren - sorry about your husband's diagnosis, but you have sure come to the right place for some help. Try to read as many of the posts as possible, and you'll learn a great deal, just like I did. I started out pretty anxious about all of this, but now I'm relatively calm still waiting for surgery. Don't be afraid to ask questions, these guys are good, and you'll have a lot of support for the events coming down the road. Keep us informed. Chris
 
Hello Lauren

Hello Lauren

I too had rheumatic fever when I was ten. Actually when I was in the hospital with a fever it was diagnosed until after my discharge when they heard the distinct murmur. I believe rheumatic fever is brought on by an untreated strep throat that has the potential to damage the heart valves.

I had my valve replaced 21 years ago this June and I am still ticking! Surgery has come a long way since I had my valve replaced (my surgery took nine hours)!

Good luck and let us know how your husband makes out.
Gisele
 
rheumatic fever

rheumatic fever

Hi Lauren,
I am another rf person. Went undiagnosed when I was young and had scarlet fever when I was 26. It affected both my mitral and aortic valve. Last week I had a mitral valvuloplasty to relieve severe mitral stenosis (alternative procedure to surgery). It wasn't terribly successful, so I will be looking at a double replacement at some point. I am 48 and have done pretty well with it all, but yes, I think eventually every one with rhd ends up having replacements.

As I'm sure you know by now the people here are extremely knowledgeable and compassionate. We all know how devestating the initial diagnosis is, and how difficult it is to deal with. Best of luck to your husband and tell him not to be shy about coming on and asking as many questions as he needs to.

fdeg
 
Lauren.
Hello
I had st. Vidas dance in 3rd grade. I'm told I had RF also but can't remember it.
I also had a AVR but my valve was bicuspid at birth. Maybe RF made it worst. who knows.
All will be well
carbo
 
Hi Lauren,
I too had rheumatic fever. I was not diagnosed until last December. I am 54. Looking back, I have had some symptoms for many years. I had my first echo after several episodes of rapid atrial fibrillation. Sometimes when I had a fever my heart would "gallop" but there really wasn't a distinct murmur.
In my case, I have Mitral stenosis, mitral insufficiency, aortic insufficiency, tricuspid insufficiency, and pulmonary hypertension.
I have not yet had any surgery but are on a lot of medicines but that is for hypertension and to try to keep my out of atrial fib.
When I run into old friends they usually tell me how healthy I look. I certainly do have "rosy cheeks" (mitral facies).
Not everyone who had rheumatic fever ends up with severe heart damage. We live in a time when things are being done to open, repair and replace valves that were unheard of 10 years ago. So many things are so new that it is hard to get accurate statistics. Anyway, everyone is a little different.
I am glad that you found this forum. I wish the very best for you and your husband. God Bless you both. -Betty:)
 
Hi Lauren,

We are sorry to hear about the news. Joann had RF as a child. It was never caught by the family doctor. (2 asprin, stay home from school for 2 days, no gym for the next 2 weeks) Her valve problems were identified in 1959. This was the year we were married. The 2 valves were replaced in 1971 and again in 1999.

Your story is very typical of many others that were born in the 30's and 40's. Today, modern medicine should identify the problem.

Make certain that you go to a major medical facility for the surgery. The issues regarding antibiotics for dental treatment is very important. Uusually the will require you to go to the dentist prior to valve surgery to identify that there is no infection.

Still clicking after 32 + years of mechanical valves.
 
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