Just wondering.....

[bvdr]

I'm spending more time than usual thinking these days and I have come to another area I'd like some input into.

My PCP reminded me this week that the valve replacement doesn't cure rheumatic heart disease but only replaces heart parts that have been severely damaged. He then proceeded to remind me that RHD is a lifelong disease and no matter how much sugery, it will always be there and sometimes make it's presence known.

So these are the questions: How is the outcome of surgery in RHD different than other valve problems? Is a rheumatic heart less likely to recover lost function than healthier hearts? Are mechanical valves as durable regardless of what kind of heart they are implanted?

I'm going to be gone for a little over a week and may not be able to reply but hopefully will be able to get online to read. I'll ask my surgeon these things but am kicking myself for not doing more than simply nodding in agreement to my PCP. I know my surgeon told me that my valves weren't worth trying to repair but this is referring to something different than that.

I hope you all have a great week and Melissa, I wish you the very best with your surgery and will keep you in my prayers.

Has anyone heard from Lettitia?

 

[LUVMyBirman]

All great questions Betty. Sorry I can't answer any of them for you. I am sure someone will be along shortly to assist.

Easier said than done......try not to worry about it too much. Your is God's hands and he will take care of you. Heart surgery is a stressful event. But as you can see..... we are all leading the best of life possible. It beats the alternative.

Please know that you are in my thoughts and prayers. Have a great trip and try put it in the backseat until it's time!

Take care.....

PS. Just wanted to add...that doctor had no right to overload you with that type of information at this point in time. Shame on him. You may find your outcome to be far off his comments.

 

[Ross]

Are mechanical valves as durable regardless of what kind of heart they are implanted?

Yes they are. They are more durable then the hearts that they go into.

Sorry, that's all I can answer of your questions this time.

 

[Nancy]

Hi Betty-

Joe had rheumatic fever as a teenager. He's been told all his life, just what you were told by your doctor. Rheumatic fever is always in your system and can flair up. He's got a 25 year old mechanical in the aortic position and a 4 year old mitral. Over the years, the rheumatic fever has deteriorated his aortic, mitral and he also has a leaking tricuspid, plus several other heart and pulmonary problems. I can't tell you whether the rheumatic fever initially damaged all of these things and over the years, they just continued to so South, or whether the rheumatic fever is in his system damaging things slowly.

But I do know that he has had some unusual things happen to him medically that no one can explain. They would be more along the lines of getting a super full-blown and life-threatening reaction, when another person would only have something mild.

Fortunately he has excellent medical care and we get things taken care of sooner rather than later. I am also always on high alert, because I'm on the front line with these things, being at home and being with him all the time. I've had to learn more things than I ever wanted to.

I don't mean to make this sound so morbid, but I do believe that rheumatic fever is underrated as a disease and does things long after the initial insult.

I think anyone with this problem, needs to keep it in the back of their mind, because I don't think much of the aftereffects of rheumatic fever are well understood.

I've tried to research the disease to see what is written about the long term effects, but there isn't much available. I think this is because rheumatic fever patients didn't live as long as they do now. Valve surgery has been a wonderful tool for this disease.

In addition, many people think this disease just doesn't happen so much, since the advent of penicillin. But to the people it happens to, it's just as bad as it's ever been.

Just make sure your care it tip-top and learn as much as you can about it. Also, and I hate to say this, but it's been true for Joe.

"When you hear the beating of hooves, it might just be a zebra after all" Many time it has been for him.

 

[bvdr]

Thanks Gina, Ross, and Nancy,

You guys are really special, I hope you know that.

 

[Birky]

rheumatic

rheumatic

I need to ask some real stupid questions since I am pretty new to all of this. Is there some way they can determine if you had rheumatic fever? We were never sure exactly when I got this since I was never sick as a kid except for the normal things. When I was around 14 I did get a strep infection. Also, if you have some enlargement in the left atrium prior to the surgery, will this ever go back to normal size. I have a list of questions for the cardiologist when I see him in Oct. but thought maybe one of you well-versed folks could give me some insight. Is it possible that this was a one time infection and will not show up on another valve? This website has made me so aware of what I didn't ask and need to know. Thanks,

 

[JimL]

Excellent question, Marcia! I hope someone has the answer.

I was told that my aortic stenosis was caused by rheumatic fever as a child. Why? Because of my age. There is no record of my have rheumatic fever. My stenosis was discovered before the normal age for rheumatic fever. Nevertheless they assumed I must have had rheumatic fever. I maintain that it was a congenital condition.

 

[Chrisandgary]

I am finding this all VERY interesting and is prickling the hairs on the back of my neck. Gary had AVR diagnosed at 23 years old - had Ross procedure at 29 and a St.Judes implanted almost 3 years ago at 32. Anyway PCP and surgeon and cardiologist said it was a congenital defect. Every so often my mother - in - law brings up the fact that he had scarletina as a young boy. Is this is a stupid question - Could this be a factor in his AVR?????
My 1 year old just had the chicken pox 3 weeks ago and my mother in law just brought this up again because my son Aidan had a very high fever 104+ with the chicken pox and I was telling her how sick he really was acting etc. She reminded me that Gary never had the Chicken pox and just had a very high fever with the Scarletina. Then she said " I often wonder if it wasnt misdiagnosed and he had something that led to his AVR and they just didnt know it back then."
Is there a test for Rheumatic fever?? I have a million questions running through my mind right now, but Ill just start with that one!
Thanks - this raises a very interesting topic that has been laying dormant here!
Christine

 

[Nancy]

There are blood markers for rheumatic fever in the form of antigens. In addition, RF patients have an extra special susceptibility to endocarditis, even in later years.

If you do a search on Google using the term:
"rheumatic fever" antigen there will be quite a few hits.

Here are some of the articles I came across:

http://www.emedicine.com/ped/topic2006.htm

http://www.emedicine.com/MED/topic3435.htm

http://www.indianheartjournal.org/Jan-Feb-2001/canweeradicate/can we eradicate.htm

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9676165&dopt=Abstract

http://www.rheuma21st.com/archives/cutting_stollerman_fever.html

http://www.americanheart.org/presenter.jhtml?identifier=4709

 

[Nancy]

Here's something I came across regarding scarletina

Here's something I came across regarding scarletina

http://www.drhull.com/EncyMaster/S/scarletina.html