Rheumatic Fever question

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Bunny_Rabbit

Howdy,

I'm wondering how many people out there have heart valve problems from Rheumatic Fever.

It seems as though I've gotten every possible valve problem from a bout of Rheumatic Fever I never even knew I had. And it all just seemed to spring up on me in an instant.

I've been told that I have Mitral Stenosis, Aortic Stenosis, Mitral Regurg., Aortic Regurg., Tricuspid Regurg., and Pulmonary Hypertension.

Is anyone else in this boat? Is it normal to get so many valve problems from something you didn't even know you had (rheumatic fever that is)? Should I accept my Dr's explaination of Rheumatic Fever being the cause?

Idunno, I just find it all a bit odd I guess.

Thanks in advance.

Bunny.
 
Rheumatic Fever

Rheumatic Fever

Bunny,

I guess I'm a little confused. If you never knew you had Rheumatic Fever what makes the Dr. so sure your valve problems stem from it. In childhood I had Scarler Fever which causes the same heart damage as Rheumatic Fever and I remember having it because I had to go and have blood drawn at certain intervales and I remember having a really sore throat etc. and I remember being puzzled when the Dr. said to my mother that we were lucky because my heart wasn't damaged. I thought that was an odd thing to say because I remember thinking that I didn't know a sore throat could damage your heart. I had a relapse of it when I was bearly over it and I didn't like going for the blood tests so I remember being ill. I also remember the daughter of a friend of ours having Rheumatic Fever and I remember her parents carrying her around and not letteing her walk. I don't know if there was any standard recommendations for the treatment of such diseases back then but I remember other people having kidney problems as a result of the disease. At any rate the Drs. assumed that my valvular disease was a result of Rheumatic Fever but when they replaced my aortic valve the surgeon felt that it was a congenital valve and not a result of the Scarlet Fever.
 
Hi Bunny-

There are several folks here who have had rheumatic fever with quite a variety of valve problems and other related heart problems, my husband is included in that group. He had rheumatic fever as a teenager, prior to penicillin. He spent a year in the hospital. He's 71 years old now, and has an aortic valve replacement which is 25 years old, a mitral valve replacement which is 3 years old, his tricuspid valve is leaking also, but that is related to his pulmonary hypertension. Right now he is in the hospital to treat his pulmonary hypertension and CHF. It appears that so far the PH is reversible, and his CHF is also being worked on. The tricuspid regurg. is somehow related to the high pressures inside the heart from the PH. Hopefully when that is better controlled, the regurg. will improve.

I brought him to a specialist for the CHF and PH.

I'm sure there will be others who will chime in here as well. It is possible to have had rheumatic fever and not be aware of it, I guess, my daughter's mother-in-law had an unrecognized case of it, and she just had a mitral valve repair.

You will love this site, and the people who come here. Welcome, and please post often
 
Hey Bunny, I am 25 years old and have rhuematic heart disease. I never knew I had rhuematic fever, but always got strep throat and there was probably a time when it didn't get treated. I found out when I was 23 that I had severe mitral stenosis. I just happened to be pregnant at the time, and went to the hospital because I couldn't breathe. I ended up being intubated, and I had a valvuplasty so that I would make it through my pregnancy.

The reason the doctors thought that it was rhuematic fever was because after my first son, Ian was born, the rhuematic fever went into my cnetral nervous system and I got sydenham's chorea. I had my mitral valve replaced a year and 4 months ago, and feel great now. I chose the bovine pericardial valve because of my age.

There really isn't an explanation as to how rhuematic fever goes to the heart or how a sore throat can change your life by becoming rhuematic fever, I was told it just happens. If you have any questions, feel free to PM me anytime. Good luck!
 
Bunny

Bunny

Hi! I saw your post on Heart center and realized I saw your name on VR. I have had 4 heart surgeries for various valves, repairs and replacements. I had my first one at the ripe old age of 18 and have been going for my "valve jobs" ever since. I have had problems with every valve also . Either repairs or replacements. The doctors told me that I also had a rhuematic heart. Then I was told that I had a congenital heart. They finally settled on the term "idiopathic hypertrophic" which just means they don't know why my heart is the way it is. In 1999 I was diagnosed with pulmonary hypertension. I also take a huge amount of lasix (a diuretic) for congestive heart failure. So you are not the only one out here who is in this boat. You have found a great sight and I hope you use it to the fullest. I really wish I would have had VR.com a long time ago. It really helps to know there are others like you. Welcome Peggy
 
RF

RF

RF is caused by strep. bacteria. Which fires up the immune system, producing antibodies that attack the connective tissues of our body. The hearts valves and our joints are made up of connective tissue. They become inflamed and stiffened and calcified. By the time the child (age 6-8) is over it ...the damage is done.
 
Here's a twist

Here's a twist

I had Rheumatic fever at the age of 12 to 13, was on bedrest for almost a year and antibiotic for years and years, I had a recurring strep infection (a certain strep causes rheumatic fever) at age 23 which one doctor/cardiologist claimed damaged my heart. I was put back on antibiotics till I was 25, that's when they claim the risk of rheumatic fever is over???

This is the twist, rheumatic fever causes stenosis, I've always had prolasped valve, both leaflets, so for the most part, other cardiologist claim the damaged was not caused by rheumatic fever???

I knew I had rheumatic fever, I was very weak, swollen joints, fever/low grade, extreme weightloss, heart enlarged, but no damaged caused, and the ritual blood test for years checking on my sedimetation rate/ESR which shows active inflamation/infection

Terry40
 
Uh, terry, I am on antibniotic treatment until I am 40 because that's actually when the risk of RF is over. Trust me, if I didn't have to take a 2 penicillin pills every day, I wouldn't. Yucky!

Medtronic, that is very interesting, I never understood how strep throat could've affected my heart, but that sort of explained it in english. Thanks!

Bunny, do you have any kids? Do you want any? If so, I would consider a bioprosthetic valve. You don't have to take Coumadin while you are on it. Even though I am done having kids, I got a bioprosthesis. I also wanted to suggest that you not get pregnant before you have your valves replaced, because of the increased blood flow, and the fact that it could kick the stenotic valves into severe instead of miled or moderate. It just makes it a very high risk pregnancy, even though it would be anyways. Isn't heart disease fun? Take it easy, and hey feel free to e-mail me anytime, my address is [email protected]. I can tell you almost anything you want to know. Take it easy!
 
Joy - No, I don't have any kids. However I'm not even sure if I want any, or CAN have any. Everything I've read on Pulmonary Hypertension is saying no to pregnancy, so I don't know if having them is even an option for me.

I hope I don't have to make any decisions on valves any time soon. I just had a Valvuloplasty done on my Mitral Stenosis in September, and my doctor says that in 10 years (give or take) I'll either need another Valvuloplasty done, or I'll need a valve replacement. However he said that before I knew I had Aortic Stenosis as well. So idunno, I go back to see him in February so I'll find out more then.

Yeah, heart disease sure is a blast! ;)

hehe.
 
I had rheumatic fever when I was 14 and ended up with mitral insufficiency, not stenosis. My brother had aortic valve problems and they thought it might have been from strep, but when he had it replaced, they said his problem was congenital.

Since I had most of the symptoms of RF, spent a month in the hospital and 3 months out of school, and was banned from competitive sports for life, I don't see how anyone could not know that they had rheumatic fever. I lost 25 pounds (too bad I can't do that now!), had chorea, swollen & sore joints, fluid behind my eyes that caused headaches, rash, bacterial endocarditis and the breathing problems that go along with that, and of course a severe murmur. I heard that RF most commonly damages the mitral valve, but I guess it could get any of them. I just don't know how you could miss it, especially with the damage that you have now.

I was on penicillin for a long time, but my doctor finally said that was no longer necessary, as it was considered "outdated". I got strep several times while on penicillin, so they figured my body was becoming "immune" to it.
 
Hey Bunny:

My husband also had rheumatic fever. He contracted it at age 19. Two of his brothers had it the same time, and when he was finally diagnosed, the two of them were in the hospital. He took penicillin till he was 38 years old, daily. He was hospitalised for a month, bedrest for an additional three months. He was almost immediately diagnosed with a valve problem. His echo's for years showed just one leak, and then three years ago, the aortic valve started leaking as well.

He had his mitral and aortic valves replaced at age 55, one year ago. He has congestive heart failure, a-fib, and now, a severely leaking tricuspid valve. He does not have PH.......or at least not yet. They think that he might have had the tricuspid valve leaking before, but the mitral leaking masked the regurg.

When you look at a lot of sites, it says that rheumatic fever is now "rare" id developed countries. Hmmmmm.

We wish you the very best in dealing with the issues surrounding your heart disease. My husband has lived an active, productive life, although never a marathon runner. Since being ill at 19, he went to the Dr. regularly, had the echo's done, and when he had a cold or whatever, he got medical assistance. He has been proactive regarding his heart disease, and yet was not encouraged to have the surgery until his heart was in very poor condition. So, take care of yourself. Make certain you get the very best medical care. You want, and deserve, as many years healthy as you can get.

Marybeth
 
ooops...wanted to add that neither of his brothers ended up with heart disease.

Marybeth
 
Joy/mberg

Joy/mberg

The more I read, the more I know, doctors have no idea on certain disorders.

My father and his 3 brothers all had rheumatic fever as kids, no heart/valve damage, just a murmur with no complications.
I was the only next generation out of 12 that got RF, and the only one with heart valve problems. Nothing so far in my offsprings or sibblings offspring (knock wood)

I remember telling one doctor I had RF at age 12 and he ask if I was out of the country at that time, because it's unheard of here in the states???

Terry40
 
Lisa in Katy

Lisa in Katy

Hey Lisa, I'm tellin' ya, I honestly had NO idea I had Rheumatic Fever. When I was younger I did get Strep Throat a couple of times, but not once was I ever told that ANYTHING could become of it.

When I was 27 I started noticing that I wasn't feeling 100%, but I just thought that maybe I was a little out of shape or getting old. Eventually it got to the point where I would lay down to watch TV, or lay down to sleep, and after about 45 minutes or so I'd be panting like a dog. I couldn't breathe, I'd start coughing, choking, and gasping for air, and it would only start to go away when I sat up. I realized that THIS was not normal and went to my family doctor. I was put on inhailers for 6 months, thinking that it was a lung infection and they would clear it up. After only about 3 months I realized that things were not getting any better and insisted on a chest X-Ray. Yadda, yadda, yadda, I had Heart Disease, and needed a Valvuloplasty.

From then on, every specialist was asking about Rheumatic Fever, and I had nothing to tell them. I knew that I didn't remember ever having it, so I asked my mom if I had it, she said no. Now they all say that I must have had it, but had no symptoms. I just find that really odd because of how noticable the symptoms are.

However, I do remember getting a huge lump on my shin a little while after having Strep Throat and asked my doctor at the time about it. He said that Strep Throat can do strange things and dismissed it. So I dismissed it. And now when I tell the specialists about the leg thing they just sort of nod and say "ahh".

It's just weird how doctors never mentioned how serious Strep Throat can be.

Live and learn I guess :)
 
hi bunny

welcome to the site.

whether you had rheumatic fever is irrelevant now. either way your valve is not functioning properly. my cardio thought that i " probably" got my aortic insufficiency " when I was child and that rheumatic fever caused the damage to my aortic valve. they really did not know. well when they replaced my aortic valve on 12/26 they discovered that i had a biscuspid aortic valve ( Means i had 2 leaflets instead of 3 ". Biscuspid vavle is a genetic disorder therefore they now know that i was born with my damaged valve and rheumatic fever had nothing to do with it.

your best bet is to do some research on valve diseases and replacement options.

Good luck

Rich
 
All the welcomes

All the welcomes

I just wanted to say thanks to everyone for the warm welcome, and all the replies.

I can tell that this site is going to be the best place for me to get all of that first hand information that the doctors just haven't experienced, or just for a place where I can vent. :)

Thanks again.
 
When I was ten.........

When I was ten.........

I had a fever for a few weeks. Missed a week of skiing during winter vacation with the following week spent in the hospital. Docs didn't know why I was sick. A few weeks later when I went for my check up at the doctor's office he heard a murmur. That was in 1966. After sending me into Boston, the doctor's there felt that I must have had rheumatic fever. (I didn't have a murmur before or during hospitalization). The rest is history. I had my valve replaced when I was 26 years old. (mitral-Bjork-Shiley) That was nearly 21 years ago. I was treated with pennicillen 3 times a day until I was about 19 or so. I never remembered to take my pills, so it was useless.

This board is a great place to ask questions and learn about how other patients are being treated. Welcome.

Gisele
 
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