Echocardiogram Results

I had an appointment for an echocardiogram last Thursday. The results came back in yesterday and it turns out that the Rheumatic Fever did cause some damage. I have what's called, Tricuspid Valve Damage or Tricuspid Regurgitation. My doctor (Dr. A) says that he wasn't even sure it was caused by RF, but my gut feeling is, he is wrong. I just have a feeling that it is me who is going to have to be proactive about my care and make sure that I do research on current treatments for RF before I just go with what the doctor(s) say.

NOTE** I have 2 different doctors, my general practice dr (Dr. A) and my rheumatologist
(Dr. B).

For example: My rheumatologist (Dr. B) says that I need to be on my antibiotic for "a year". That sounds horrible to most people, but after doing hours upon hours of research, I truly feel that "a year" is not long enough. You see, every single person I've talked to who has had or knows someone who had RF has to take a small dose of antibiotic for the rest of thier lives. It seems the older they get, the more it is the "rest of your life", the younger they are (say 5 years) they seem to be able to discontinue the medication at 21 years or something like that. So then my concern is, why do I have doctors who seem to not be as concerned with my treatment as I feel other doctors are in other RF cases?

Another example: My heart. It's quite known that RF causes heart valve damage. In fact, it's one of the #1 causes of death in 3rd World countries and is back on the rise in the USA. If my scan came back with "valve damage"...no matter how "mild"....wouldn't it be SAFE to say that this damage was most likely caused by the RF? Ahem...RF that went UNTREATED and UNDIAGNOSED for almost 5 months!!! (I'm not pointing fingers, it wasn't even something that I would have guessed) Instead, Dr. A's notes (not the cardiologists notes) says he's not sure it's from RF. Well....I love the guy, but he didn't even know I had RF. Had I not done research and presented him with other "diagnoses" then I'd still be under his care with a RAGING strep infection and even more damage to my heart.

I think it's very safe to say that I need to be more active in my own care...period. I should know well enough by now that I need to trust my own instincts and ACT on them. Had I been more persistant in Brenden's care...maybe he would have had his surgery years ago when it would have been much better for him. All things happen for a reason though.

I'm very thankful that my heart damage is minor (Dr. A says) and I believe that God will heal me in His own time and according to His own will. However, I feel a doctors job is to present the WHOLE picture to thier patients and not try to sugar coat it. There are many things that could contribute to my valves getting worse. Age, weight, activity level, heart attack, another strep infection, etc, etc, etc. Why do I have to find all this out on the internet? Why can't a doctor just tell me these things straight up? I just want honest answers and proactive treatment.

Anyway- enough about that. I go in to see my rheumo on Feb. 11...and just as he was up front with me about possible heart valve damage, I'm sure he'll be quite frank with me about other things too. He better be!!!

I'm definately starting to feel better. I have more energy during the day and if I take a 1 hour nap in the afternoons, I'm good to go for the rest of the evening. I am still getting new nodules on my legs and that's a pain...literally. The other night I was trying to relax and I started feeling like someone was poking me with fire pokers in my leg. The next day, I noticed 2 hard bumps that were sort of tender. They are kind of hard to see, but really popped out when I took a bath. My rash does the same thing. Currently, you can't see much, but a slight discoloration in my skin all along my arms. It doesn't look ugly, but people notice it if I point it out. When I get in the bath/shower, the color pops out and is very red for awhile.

I still suffer from arthritis in my knees, ankles and legs. I sure hope this goes away because I want to start exercising and my legs are getting in the way. I plan on purchasing "The Biggest Loser" workout DVD. I've heard wonderful things about it and it's fully customizeable. You can get it at Wal*Mart for $10 dollars. Which reminds me, I need to buy the kids socks, too.

Braden and Casey had Strep throat last week. Poor guys. They actually have the beet red, puffy throat that hurts and fevers. Braden went back to school after being on antibiotics for a couple days . They are both feeling better and Casey only has a couple more days of antibiotic left.

I'm wondering who's next? Luckily, Dr. A just said to call if any of the kids got sick with a sore throat and he'd call in an Rx.

Well, I'm off to Bible Study. I don't even have the books yet (haven't ordered them either), so I hope someone will let me make some copies today.