My name is Josephine (well the Slovenian version of it) I will be 35 years old on September 29th (I just recently found out, that this is also the International Heart day!). Last year I had rheumatic fever, that went undiagnosed or rather misdiagnosed for many many months. When I joined this site, I was looking for members with similar experience, which is why I now decided to start writting a journal - I will update this thread each year once, so that any newbies looking for rheumatic fever survivals will have a systematic overview of how this disease affected my life throughout time.
1.) What is rheumatic fever
Rheumatic fever is a autoimmune disaese in which the body's own antibodies to strep attack different parts of a person's body such as the heart valves, the brain's basal ganglia, and the joints.
Thus rheumatic fever is an inflammatory disease that CAN follow untreated strep (two to three wekks after strep infection). It usually attacks children, but around 20% of first time attacks happens to adults. http://en.wikipedia.org/wiki/Rheumatic_fever
I was told that the damage to heart valves becomes prominent as time goes by, so usually not immediately after the attack, but during the years to come.
2.) How I felt during RF attack
I had buring sensation all over my skin, my joints were hurting,I felt enormous internal pressure, like I could explode anytime, the pressure was worst in chest and brain area, my eyes were swollen, I felt dizzy. Each time I would go from sitting to standing position, my heart would start racing; both my blood pressure and heart rate would jump heavily. I had trouble breathing (I felt like I was suffocating), was short of breath, and the vein in my neck was pulsating. I had night sweats and shaking chills, I was bedridden and had to move to my parents house (I live alone, single, no children), since I was not able to carry after myself.
I have been a very healthy individual (in fact the only time i was sick was when I had strep when I was around 10), but had enormeous stress in the year before getting sick, so it seems it was just to much of everything.
3.) Evaluation of life after RF attack
I find it difficult to assess life after RF attack, as it is not long since I was diagnosed and getting treated. Heart ultrasound (TEE and TTE) did not show any damage to my heart valves, but I'm still not able to involve in physical activities. I lack stamina and it is emotionally difficult time, as I'm still dealing with accepting what has happened and I'm mad at our health system (we have public health system only, with long waiting lines (over one year for the first visit to rheumatologist!!!!) and it is heavily corrupted - you CAN NOT pay out of your pocket to skip the lines, but if you know a doctor, you will be seen immediately and waiting lines will not apply to you).
This said, i do not have trouble with breathing anymore and I definitely feel way better than during the attack. But I would be lying to say, that my life is the same as before I got sick.
I think this will be all for my first entry, as said, I will update it yearly. Just a disclaimer:
A.) I was untreated. Someone who got treated in time SHOULD have less consequences! In fact if you get treated in time, you might not have any long-term consequences or you could go on for several dacades (as long as 5 dacased or more) before the damage to heart valves starts to affect your life.
B.) My attack was severe. I read that some members were surprised to found out, that the damage to their heart valves was caused by RF, as they were not aware of having the disease. I would speculate that in severe casese damage is bigger/changes life sooner than in milder cases.
C.) I mmagine that even in two persons with severe untreated attack there can be enormeous differences in how it will affect their lifes. There is simply no way of knowing how it will turn out and each one has his/hers individual story.
I hope that my journal will- in years to come- help to all those searching for similar stories and trying to figure out what lies ahead of them (that said, I do not wish to anyone to be misdiagnosed, it is a real shame for that to happen in 21st century).
1.) What is rheumatic fever
Rheumatic fever is a autoimmune disaese in which the body's own antibodies to strep attack different parts of a person's body such as the heart valves, the brain's basal ganglia, and the joints.
Thus rheumatic fever is an inflammatory disease that CAN follow untreated strep (two to three wekks after strep infection). It usually attacks children, but around 20% of first time attacks happens to adults. http://en.wikipedia.org/wiki/Rheumatic_fever
I was told that the damage to heart valves becomes prominent as time goes by, so usually not immediately after the attack, but during the years to come.
2.) How I felt during RF attack
I had buring sensation all over my skin, my joints were hurting,I felt enormous internal pressure, like I could explode anytime, the pressure was worst in chest and brain area, my eyes were swollen, I felt dizzy. Each time I would go from sitting to standing position, my heart would start racing; both my blood pressure and heart rate would jump heavily. I had trouble breathing (I felt like I was suffocating), was short of breath, and the vein in my neck was pulsating. I had night sweats and shaking chills, I was bedridden and had to move to my parents house (I live alone, single, no children), since I was not able to carry after myself.
I have been a very healthy individual (in fact the only time i was sick was when I had strep when I was around 10), but had enormeous stress in the year before getting sick, so it seems it was just to much of everything.
3.) Evaluation of life after RF attack
I find it difficult to assess life after RF attack, as it is not long since I was diagnosed and getting treated. Heart ultrasound (TEE and TTE) did not show any damage to my heart valves, but I'm still not able to involve in physical activities. I lack stamina and it is emotionally difficult time, as I'm still dealing with accepting what has happened and I'm mad at our health system (we have public health system only, with long waiting lines (over one year for the first visit to rheumatologist!!!!) and it is heavily corrupted - you CAN NOT pay out of your pocket to skip the lines, but if you know a doctor, you will be seen immediately and waiting lines will not apply to you).
This said, i do not have trouble with breathing anymore and I definitely feel way better than during the attack. But I would be lying to say, that my life is the same as before I got sick.
I think this will be all for my first entry, as said, I will update it yearly. Just a disclaimer:
A.) I was untreated. Someone who got treated in time SHOULD have less consequences! In fact if you get treated in time, you might not have any long-term consequences or you could go on for several dacades (as long as 5 dacased or more) before the damage to heart valves starts to affect your life.
B.) My attack was severe. I read that some members were surprised to found out, that the damage to their heart valves was caused by RF, as they were not aware of having the disease. I would speculate that in severe casese damage is bigger/changes life sooner than in milder cases.
C.) I mmagine that even in two persons with severe untreated attack there can be enormeous differences in how it will affect their lifes. There is simply no way of knowing how it will turn out and each one has his/hers individual story.
I hope that my journal will- in years to come- help to all those searching for similar stories and trying to figure out what lies ahead of them (that said, I do not wish to anyone to be misdiagnosed, it is a real shame for that to happen in 21st century).
