New to the Forum - My Story - Rheumatic fever one year ago

[NewbieSlo]

Hi, I'm 34 years old female, and up to last year I had no health issues what so ever. Last year I got terribly sick, for buiness I travel a lot (to underdeveloped countries), and before I got home and got diagnosed (they were excluding all sort of things like malaria, hepatitis etc) it took several months. They finally discovered that I had rheumatic fever, but by this time I almost overcomed it on my own - without beeing treated (how the hack this can happen in 2013 in a country in Europe, it is still making me mad that they took so long to diagnose me even after I came home). On the regular TTE they do not spot any heart demage, but beacuse I had clear heart related symptoms , I will have TEE in a week or so. I do hope that TEE will give me some information on the state of valves, but they did tell me, that damage can also appear latter on - so it can not be spotted right away, but does progress in time and eventually replacement surgery is needed. So I'm affarid that even after TEE I will not know much in terms of how long my valves will last (a year, five, ten?), and for me, there is nothing worse than uncertainty . I like to make plans, predict, so this is completely new to me. I'm still dealing with anger (even after coming home, it took them a couple of months to diagnose me!!!! and they even put me on antidepressants as they thought that it was all in my head), feeling of guilt (I did see so many specialist, including 3 cardiologist before I was diagnosed, but I still blame myself that perhaps I could have done more). But most of all, I'm affraid and puzzled, as for the first time in life I feel so powerless and out of control. I feel like there is nothing I can do, to make things better, and all I can do is wait. No that is new to me! I do not have even rough timeline in terms how long my valves will last which makes me depressed (yes, now i could use some antidepressants). Rheuamtic fever is very rare where I live and non treated rheumatic fever - well my doctor does not know anyone, and I got completely different oppinions from two doctors - one saying that the surgery is likely to be needed in a couple of years (which does sound like mid terms to me), the other saying in "many years". Oh, did I mention that I don't have kids yet? I always thought I have all the time in the world and focus on my career and postponed family plans .

Is there anyone out there, who has not been treated for rheumatic fever that can share with me how long it took for them to require surgery? I know each case is different, but I would love to here your stories.

I have been following this forums for about two weeks no and I must say that it has been of great help in terms of giving me hope. I would like to thank everyone who is sharing their success stories and proving us, Newbies, that QUALITY LIFE is possible even after valve replacement.

 

[dick0236]

who has not been treated for rheumatic fever that can share with me how long it took for them to require surgery[/B]? I know each case is different, but I would love to here your stories.

Hi NewbieSlo, Welcome. My story is a similar to yours. I had scarlet/rheumatic fever when I was 5 and before they had many anti-biotics, not even penicillin. I was pretty much bedridden for several months but recovered well. I lived a pretty normal life until I was in my late twenties and was pretty much asymptomatic until I had surgery at 31......probably would have had surgery earlier if valve technology had been farther along. In hindsite, the surgery, nor the mechanical valve, has had a great impact on my life, although it took many years for me to finally accept that and live a normal life. A lot of my post-op fear was due to lack of information...... forums like VR.org go a long way in minimizing those fears with good advice and support. I can tell you that a GOOD QUALITY OF LIFE is probable after the surgery. Read all you can and I believe you will find that OHS is only a "bump in the road".

 

[NewbieSlo]

Hi Dick, I'm so glad you replied! I have seen in other threads, that you are a true rock star of the forum, and a real inspiration for all of as. Not only you have been living with the artificial valve for so long, but you remain active and positive.

Right now I'm still in denial/anger/confusion state: how the hell it could take them months to diagnose it (in 2013?!)? I only wish I could do such mistakes at my work without paying the consequences! Well I gues the anger does not help, what is done is done, but I still trying to accept it. I do read a lot about the disease lately, perhaps even too much, it is very easy to become obsessed with and panic even more (you see post of people having strokes, etc). I will try to focus more on the positive news, and keep my fingers crossed, that they will come up with some advancements (like tissue-engineered heart valves or 3d printed heart valves - I know it will be probably to late for me, but it is better to hope than dispair, I guess)

My mom claims (but than again, she is my mom and would say anthing to make me feel better) that a 85 year old lady in our village has been living with an artificial valve for 30+ years. She is still indipendent, goes for daily walk, in short, she is still here and doing fine, while a lot of her peers who did not suffer from heart valve disease, are long gone. Well, I gues I have to trust here, since I can not just approach the lady and say: hi lady, do you trully have an artifickial valve?

Dick, thanks again for sharing your experience and for being so supportive!

 

[dornole]

Wow, finally I have something meaningful to contribute! Welcome Newbie. I have mitral valve damage from rheumatic fever also, and like you I felt a little bit "what the hell?" about it as I live in the US, was born in 1967 when plenty of antibiotics were available, and I never even went overseas like you. In fact neither I nor my parents was ever even aware of my ever having rheumatic fever (though the type of damage I have, docs say that's the cause). First I heard about it, I was 34 and pregnant with twins & the extra blood volume associated with that caused me to develop congestive heart failure due to mitral stenosis. I have no idea when the original infection and damage occurred. (I did have 3 prior single baby pregnancies, and looking back I definitely had symptoms on the 3rd one, but nobody picked it up. Congestive heart failure and pregnancy share a lot of symptoms, and who thinks of rheumatic fever in the US in 2002?). It was for sure a "I have what??" deal. And I was the star of the first world hospital with people wanting to check out my "classic rheumatic murmur."

That said, in my case it hasn't been so bad. I had severe mitral stenosis (narrowing) that showed very clearly on a TTE (even I could see it looked damaged),but that was still correctable via a balloon valvuloplasty procedure - no surgery, just a balloon up the vein - and for 12 years now I just take a daily full strength aspirin and go back for echoes regularly (used to be yearly, now it's 6 months, but it might go back to yearly again if there are no progressive changes). I run, I lift weights, I have no restrictions on my activity. Next time, I will need replacement as I now have regurgitation and that can't be fixed via balloon. Especially with mitral regurgitation, surgery may be recommended even without lifestyle symptoms in order to prevent non-correctable damage to the heart from developing, so it's very important to get those followups as prescribed.

I also pretty much like certainty and control . . . so here is what I do to cope with the unpredictability. MY JOBS = go to all followup echoes, get a strep test every time I have a sore throat, take my prescribed aspirin and keep my gums clean. I also try to keep fit and keep my weight down because I figure it can't hurt if my heart has less of me to haul - though that's really more an "illusion of control" thing, it still helps me. I use a heart rate monitor so I can objectively detect if my functionality is decreasing and this is a comfort. I keep my mental health good using all means available. UNIVERSE'S JOB = decide when my valve fails. That's not my job. I release it and live my life.

Though I haven't gone through it yet and of course hope for another decade of delay, this forum has been very comforting that OHS is just a bump in the road that we can get through. I hope your TEE goes well and that you can dodge the surgery bullet for a while, as I have. Fingers crossed for you.

 

[NewbieSlo]

Hi Dornole, thank you for sharing your experience. I'm also the "star" in our hospital, and I hate it, as by some doctors I'm seen as non responsible - had I been responsible this would have not happened! Here there is huge campaign about not overprescribing antibiotics, so it is not easy to get them, they have to be 100% sure, that you need them, and well, I did not get them. I really don't know why we need to complicate so much, I noticed, that in some countries you can even order them via internet! I'm not sugesting, that is should be done, but they could simplify things and have testing fot strep in pharmacies- if you would test positive, you would get antibiotics, and that is it.

Unlike you, I did felt sick as a dog last years and kept going to the doctors, but here rheumatic fever is so exotic, and especially in adults, they obviously don't even think about it, and given my constant travelling overboard, I was tested for almost everything under the sun BUT rheumatic fever. I did have a very stressful year last two years, an obviously my immune system could not deal with the infection :-(. Prior to that I have not been sick in almost 20 years, so this comes as a big shock to me.

I'm nost sure if I'm gonna be so lucky in terms of having relativelly minor demage, as I said, I was terribly sick with classical heart symptoms, that are still present, but for sure to a minor extend than last year. But I do hope that when needed, I can first get repair surgery before replacement is needed, as I would still love to have a family. But I will for sure not push for pregnancy if it turns out that my heart could not take it or that I would need replacement surgery soon. I this case might decide to go with adoption, or just spoil my cousins kids (i'm the only child), surrogay is illegal here.

I did not think yet about which valve would I choose, have you? At my age I'm not sure that I would go for tissue, despite possibility to get pregnant, as it could need replacement before I could event get pregnant (I was reading about people who only had it for 2 to three years, and if they were to do the replacement now - I do not feel strong enough to get pregnant, as I'm still quite weak, not to mention, that infertility issues run strong in our family). Strangely enough, I know that if I were to have first repair and than replacement surgery, I would not hesitate to go first for the repair, eventhough this means again multiple surgeries - but it is different in my head, I would like to keep my valve for as long as possible.


I'm now ordering Strep A test for home use, so that I will be able to self-test (not meaning, that I will not go to the doctors, but it will give me some additional peace of mind). I will try to calm down and not think too much ahead, I do hope that I will come to that "stage of mind" soon

 

[dornole]

Actually it's more like you have a killer ninja immune system, as rheumatic fever is basically an autoimmune reaction wherein your immune system confuses heart valve tissue with strep. It's associated with a specific tissue type. I never get sick either and when I did, I never used to go to a doctor . . . I told them I was just coughing up "a little" blood when I was hacking out the size of a quarter - what was I waiting for, buckets? I'm a more balanced patient now. I see this as so out of left field that nobody could be expected to respond perfectly and immediately, either me or the docs. Yeah maybe somebody could have stepped up and responded better, but we all did the best we could at the time.

Try not to think too far ahead if you can. You'll have much more information after your TEE and you can think about it then. You'll know your current status, what they'll want to track, and the full range of intervention options. Then you can mesh that with your family planning as needed. Just know there's a ton of hopeful info on here about people who have pulled it off pregnancy, even with a mechanical valve, and you are so right that there are other great ways to bring children into your life. You first though - figure out what's going on with you. You'll be able to get advice on your family options when you need it.

When it's my time for another intervention, I'm pretty sure it'll be a mechanical valve replacement (unless I find a surgeon who wants to attempt an open-heart repair - my cardiologist says the valve is too deformed in his opinion, and the nice easy overnight-hospital-stay balloon is out, sadly). I'm done having children, I'm still young (46) so tissue valves tend to deteriorate even faster, I suspect that my hyperactive immune system would attack the hell out a tissue valve, and the mechanical seem to be more durable-- I prefer not being cut open too many times. I think I can handle the coumadin.

Like Dick said, you're likely to have a long and good quality of life and to be restored to life and health at the end of all this. His perspective is great. I'll be thinking about you and wishing you the best possible outcome from your TEE.

 

[river-wear]

Welcome, newbie! I hope you can find answers to many of your practical questions here (as opposed to those best left for your doctors.)

I've always known that rheumatic fever can cause heart problems, but I never knew exactly what it was so I did a little searching. I have a question for all of you who posted: how long were you on antibiotics after the acute phase ended (to prevent recurrence)? The Mayo Clinic says a minimum of five years when there has been heart inflammation, and another site says five years unless you also had carditis, which lengthens the time to 10 years. I had no idea treatment would last so long.

 

[dornole]

I never knew I even had anything and was never on antibiotics. They guessed that I would have had it as a child as that's most common, and I was already 34 when the damage was discovered.

 

[dornole]

I've read that up to 1/3 of people who get rheumatic heart disease show NO symptoms. Scary!!

 

[NewbieSlo]

Well I for sure knew, that something was terribly wrong :-( But the symptoms can be all over the place: from neurological, to rheumatic, so perhaps that complicates the diagnosis...

As to how long you should be on antibiotics - I am yet to hear my verdict (after TEE), but I was told, that it will take minimum 10 years - in the form of monthly penicillin G shots in the hospital.

 

[pellicle]

Hi and welcome

I'm glad to hear that you've found a place where people can share with you similar stories.

Diagnosis is difficult, especially for Doctors who just don't get to see a disease much (because its less common in the west).

Disease damages us there is no two ways about it. Life is often a series of cumulative injuries upon us from birth. I find it sad that the modern TV / FPS / RPG generation seems to forget that the injuries are cumulative and not resetable. I ride a bike, and I can assure you that the neck injuries I've had from being hit by cars do not simply vanish when you are "better".

I've now had 3 Open Heart Surgeries, my issue stems from a congenital Bicuspid Valve, so I didn't even get it from a chance encounter in a 3rd world place, I got it from the dice-roll of birth. Life deals shitty hands no doubt. My infection from my last surgery was a shitty hand as was the sudden and unexpected death of my beloved wife from a brain tumor also a shitty hand.

I am still mentally recovering and coming to terms with the changes in my life is challenging. However I see that the person best located to benefit from me getting a grip on things is me. Likewise it is true for you too. I hope that you come to terms with it all, and I hope that you quickly move away from needing the anti-depressants, for they will actually be the ruin of you in my opinion.