I'm glad to hear you sounding so much better today! What do they say about the heart enlargement?
"Because he is he and I am I."......E. V. Lucas
"I Hope You Dance".............LeeAnn Womack
Hi everyone... Being the computer addict I am, I'm always looking for new news on pericarditis. Today I found an abstract to a very scary article. It was focused on recurrent pericarditis, and it said that about 10% of the cases they studied (a little over 100) incessant or recurrent pericarditis was attributed to a previously undetected cancer. Wow. 
I'm not sure if 100 subjects is statistically significant (I hope not). I found another article that was discussing if this is a hereditary condition. I couldn't access that abstract but forwarded it onto a doctor friend of mine who probably has access. For all of you with pericarditis, are you the only one in your family with it or anything related? With the hope for children in my future, I feel like I want to know as much as I can beforehand.
Boy this board is quiet today! I guess that means everyone is out and about. Awesome! Hope all is well
"Because he is he and I am I."......E. V. Lucas
"I Hope You Dance".............LeeAnn Womack
Maya,
I have recurrent pericarditis and have had it for over a year and a half. The first year I would have an episode about every other month or six weeks. It would start with fatique, fever, chest tightness, chest pain and shortness of breath. I thought it was bronchitis and would take Advil and an antibiotic. I usually was able to beat down the inflammation and feel okay for a few weeks, them bam it would surface again. After a while it would begin with a tightness in throat and a pain in the left ear. Finally the worst episode resulted in a pericardial effusion and pleural effusion. I was put on prednisone - 60, 40, 30, 20, 10 etc. and ibuprofen - 2400 mg. per day. When I started to feel better, I would back off on the meds myself. Not a smart thing to do. Over a four month period I was on prednisone, colchicine and ibuprofen. However, I had recurrences every month and sometimes sooner. My husband and I decided to go to Mayos because the local docs had no experience with recurrent pericarditis. I did much of the research myself and convinced my cardiologist to try the colchicine. He would go along with whatever I suggested.
The trip to Mayos was very worthwhile. The cardiologist there is experienced in pericarditis and explained my options very well: 1) Begin a trial of high doses of ibuprofen - 3200 mg. per day for 10 days, then down to 2400 mg. and so on over a 3 month period. If I have a recurrence, the trial is considered a failure. 2) Try a trial of prednisone if the ibuprofen fails following the same type of pattern - start out high and taper. If there is a recurrence, this trial is considered a failure. 3) Have a pericardiectomy.
I tried the trial of ibuprofen even though I had been on it, prednisone and colchicine for a few months. Ten days into the ibuprofen I had side effects - diahrrea and tongue sores. I decided to go off all meds. Within two days I had a severe relapse and decided surgery was the only way to get better. By the time we drove to Mayos for the surgery I was beginning to feel pretty good. I met with the doctors, and since I do not have any constriction, they said I could wait to have the surgery. That was July 29th. I have been off all meds except for a few incidences when I felt achy and the blockage in the throat. Then I took 400 mg. of ibuprofen. Overall, I'm doing well.
It sounds like you have done alot of research. Perhaps you have read some of the articles by Dr. B. Maisch from Germany. In some of the studies, they have reported that prednisone can actually attentuate pericarditis.
Yes, recurrent pericarditis, which is different from constrictive pericarditis, is a frustrating disease, but don't give up. It can mysteriously leave the same way that it appeared. Make sure your BF gets plenty of rest and good nutrition. Foods to reduce inflammation are important. Reduce stress too.
Best of luck,
Specky
Nothing new here...thinking about plastic surgery for my scar...any thoughts or info on cost? I'm missing V-neck shirts...although I don't really mind having a physical reminder of a life-changing experience. How long does it take to not be red? The bottom half of my scar is wide and flat and light and the top half is raised up and red...totally not important I know...just throwing it out there...
Have a great weekend...I think of all of you often...
Nan
Thank you Specky! I really appreciate hearing your story.
His case of pericarditis is quite unusual. He says he had his first attack about 7-8 years ago (before we met). It went away on its own, and he never had it diagnosed. Then, about 4 years ago (once we were together) he had a pretty serious attack... Finally went to the doctor, has his echo done, and was tested for all the associated illnesses (cancer, lupus, etc) and they found nothing. He was able to control the pain with ibuprofen and it went away. Back in May of this year, he started to feel very bad. Fatigue and a lot of pain in his shoulder. He went to the doc and via the echo they could see some inflammation and fluid. Doc gave him some painkillers and anti-inflammatory and said to come back the next day. This went on for about 2-3 days. On the 3rd day when I got home from work he was in soooo much pain, could barely take it. We got through most of the night, and at 5 am I decided to take him to the ER. The poor guy was suffering so much. At the ER, they found out he was in cardiac tamponade. The doctor said that if they would have waited 30 minutes longer to do the cardiocentesis, he could have gone into heart failure from the compression. They drained 500 ccs of fluid. It was brutal. He spent about 5 days in cardiac ICU, had atrial fib and a really fast heartbeat. They cardioverted him, the whole works. God, it was crazy.
Since coming home, they started him on colchicine and motrin. He started to have fluid again, so they put him on prednisone. Started at about 50 mg I think. When they started to decrease the dose, he was fine until 20 mg, then he had an attack again. So back up to 40 mgs we went. The taper has been much slower this time, to give the body more time to get used to it. We are at 20 mg again now, and it has been fine, except that he has started to feel a very very slight feeling in his shoulder -- he can't even describe it as discomfort -- less than a 1 is what he says. He had an appt with a new doctor (I'm always looking for 2nd and 3rd opinions) on Friday of last week and she took blood to measure the SED rate. She couldn't hear any rub. Well I was so worried all day yesterday, at what the SED rate would be. And thank god, it was a 1! That means no inflammation. So who knows what he is feeling. She said he is so in tune with his body, that he may be overly sensitive to the slightest thing.
We were both SO happy. I think he should stay at 20 mg for a while longer, than slowly go down again. He is still on the colchicine and motrin in the meantime. But he has energy and is feeling good. Yes, I am ALWAYS telling him to rest, and I always cook good food and make sure he eats lots of fruits and veggies. Good foods to avoid for inflammation include eggs, dairy, and sugar, FYI.
Thanks for all your input 
It is so helpful!
But your attitude is great - and that'll help you through a lot! Now it blends in and most people never even notice it. "Because he is he and I am I."......E. V. Lucas
"I Hope You Dance".............LeeAnn Womack
OHH by the way....
NAN, I have spoke to a plastic surgeon about the scar, and they can do what is called scar restoration, and they can't TOUCH it for six months, BUT, if you are past the six month mark, they can do WONDERFUL things...he told me that they all but erase it...it is amazing what they can do...JUST make sure you go to a GREAT plastic surgeon, it will make all the difference in the world..altho, my scar is not visable on my chest. Because he went so far past my breast, and then upward towards my armpit, if I wear a tank top, you will see a bit of it come up if I raise my arms, so i am going to do it without a doubt. Its not expensive...hope that helps Nan!!
Cathy
Maya,
Thanks for telling your BF's history. Wow, being at the point of cardiac tamponade is serious. I didn't have enough fluid to safely tap it, although at the time I really wanted to know what was in it. I'm sure they ran tests on his fluid. So many things can be determined by testing the fluid and/or ruled out to the point that they diagnose it as autoimmune. When I had by first attack, which sent me to the ER, my sed rate was 14 - normal for women. When I was on prednisone, colchicine and ibuprofen, I would have my sed rate drawn every week. Sometimes it would be as high as 67 - not a good time. Many of my recurrences started with pressure in the shoulder; usually near the left collar bone, but sometimes the right too. I'm sure your BF knows his body very well and he should listen to it. One doctor told me that if I had a relapse I was to return to the dose of prednisone on which I felt well. The doctor at Mayos said to taper very slowly, but a recurrence on a slow taper was considered a failure. There are so many opinions out there regarding this disease.
I'm trying acupuncture next week. I'll let you know how it goes. One more thing. Please be sure your BF is taking something to protect his stomach if he is taking ibuprofen everyday. 20 mg. daily of Aciphex works great. Get it from his doc.
Specky
"Because he is he and I am I."......E. V. Lucas
"I Hope You Dance".............LeeAnn Womack
Hi guys! Thanks Teri and Cathy for the great scar info...I think I might have that keytoid or whatever it is called...it is wide at the bottom and a big ridge at the top. I definitely think I'll look into it...maybe I'll keep my bullet holes for a reminder :)
Maya...you sound so strong...your bf is lucky to have you on his side...keep it up...hope this taper goes well and it is gone for good!
Teri...CONGRATULATIONS on 1 year! Whoo hoo! What was worse? Your bypass or your endarderectomy? I've worked with patients after both but that neck incision always looks so painful! Glad you are past all that!
Think of you all often...take care...thinking of you Mrozek...
Nan
Specky, he has been going to an acupuncturist for about 2 months now. Who really knows if it has helped, but it sure hasn't hurt. He also started going to a holistic/alternative medicine doctor (who also happens to be an M.D.). He has been getting all sorts of natural things to take (in addition to all the other meds). So far so good. He does take something for this stomach, is it ranitidine (Zantac)? Who even knows, there are so many bottles!
His doctor didn't consider having a recurrence while tapering off steroids to be a failure. It is very difficult for the body to withdraw, some probably have a harder time than others... he thinks the first time they decreased the dose they probably went too fast... so now it is decreasing in smaller doses, and waiting more time between each decrease. So far so good!
Specky, they did test the pericardial fluid, and nothing. Hence, the idiopathic diagnosis. In a way, it is good because you know it definitely isn't certain things, but it is also bad, because you just don't know what it is...
Last night I had dinner with my dad, who is an MD, and not very "fond" or supportive of my relationship. Hence, I feel like he tries to bring me down about it. I was talking about bf's situation, and how the pericarditis goes as mysteriously as it comes, and he said "And it can come back just the same. Don't be naive. And just because they don't know what is causing it now, doesn't mean they won't find a cause sometime in the future." I guess he is right, but I feel like that is jut not the right attitude. Is there any data out there that anyone has found that documents how often it comes back after seemingly being gone? Trying to ignore his negativity isn't so easy, but he does have some good points. Oh well.
Hope everyone has a good day and is feeling good :)
Hi, everybody.
Re: the scarring. I think I'm with Nan on this one---I kind of like my scar! But then again, one of my colleagues told me that "Real men have scars," which is *exactly* what I wanted to hear. 
I also have more of a ridge at the top and bottom of my 10 1/2" scar---exactly in the way you describe, Nan. I think this is because this portion of the skin is not quite as cleanly cut as the center, perhaps? I.e., it kind of gets stretched out when they jack your ribcage open? (Sorry if that's a bit graphic...) In any case, the head CT nurse told me that the subdermal stitches have a tendency to pop out at the top and the bottom of the incision. (I had to have a couple of them trimmed...)
Maya---that's really bum that your father is not more understanding. Of course he's probably just trying to be protective, but still!
It's good to hear, too, that you're so on top of everything. Hopefully this taper will work and everything with your BF will be over and done with.
And honestly---everybody---is this disease ever anything *but* ideopathic? In the end, I think mine is properly characterized as "ideopathic viral etiology."
Best wishes to all, especially Mrozek. Hang in there, man!
---Mister S.
Mister, Nan, Cathy, Mrozek, and all -- I promise you all that the scar will look better with time! :) I guess I look at it more like it's another one of life's battles that I've won! - you, too! lol
Hugs, Teri :)
"Because he is he and I am I."......E. V. Lucas
"I Hope You Dance".............LeeAnn Womack
Hey Nan,
I feel the same way you do with the scar, if we can do something to make it better, why not? I know with men, it becomes a badge, and is COOL for men to have scars...unfortuntely, women do the feel the same. I doubt a guy would walk up to us and say, "Hey, COOL SCAR"..lol, but I remember an old boss of mine had open heart surgery many years ago, and every time we saw him he would say, "wanna see my scar"...lol, he was so proud of it. I am going to wait the six months and have something done. I am doing to do the same thing you are doing Nan, with leaving the bullet holes alone. They are so far on the back, and so small, they are hardly noticable. My scar under my right breast runs about five inches long...same with the left breast. IT does not continue between the two, so I could wear a dress that could be cut down to my belly button, ALTHO, I never would..LOL, the only part that could be visable, is under my arms, and only if I lift my arms. SO I will have to remember, when I am out in a dress, to keep my arms down!! Being that I will soon be going through a divorce, I have a tendency to be a bit more self conscience about it. IF I was going to stay in my 18 year marriage, I wouldn't care as much. Anyway, all is going good, I am feeling better, the reporter and photographer are coming with me to my FIRST CHECK UP with my cardiogist since surgery. The article comes out soon, so I will fill ya all in...Teri, hope all is well..how is your depression ?? You sound great now! Cathy
"Because he is he and I am I."......E. V. Lucas
"I Hope You Dance".............LeeAnn Womack
Hugs, Teri :)
"Because he is he and I am I."......E. V. Lucas
"I Hope You Dance".............LeeAnn Womack
