Pericarditis & Pericardiectomy...Part VI

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!

hope all is well, I am still recovering from the surgery if you can believe...still not rapid heartbeats...no swelling...I go to the cardiogist for my first echo Friday, and Cleveland sent all my records and films today.  There must be over 25 films..xrays...and they sent a DVD of my heart cath.  It will be interesting to compare.  They also sent all of the doctors notes..etc.  Good to have, since they are out of state..

take care all....best wishes Mzorek....I know the date is creeping closer and closer...

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

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

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.

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

 Mrozek,

Much Good Luck to You and Best Wishes Always!!

We'll be thinking of you and waiting to hear how all this goes for you and hoping to hear from you soon -- so Please check in with us when you are able to!!

Bunches of Hugs and Bunches more of positive thoughts!

Teri

Hi and Welcome to HealingWell, shayshay!

You have definitely come to the right place!  As you can see, we are already on Part VI...the other parts are on the forum here on pages further back.

You've sure been through a lot already! 

I myself have had a bypass, but the others here that will come along, have had constrictive pericarditis.  We've had several already that have gone through the surgery and come out on the other side feeling greater than they have in years!

I'll let the resident experts offer their advice to you.

My best wishes to you!

Hugs, Teri :)

PS  Do you already have your hospital and Dr. picked out?