Pericarditis & Pericardiectomy...Part VI

Welcome to Part VI of the Pericarditis and Pericardiectomy Thread!!  

 

Here's a place to share your experiences, learn from others who have 'been there before' and offer your support to members who have questions or concerns re Pericarditis and it's effects on the body.

Thanks to all of you! 

 

Best Wishes & Hugs, Teri

 

PS  As you can see this is a very popular thread, so if you'd like to read the previous threads, they are found on other pages of the Cardiovascular Forum here, starting with Part I.

Boy... I got lost in Cyberspace.. but finally I found the right board... I'm still alive and getting ready...

Thanks for your work Teri16 !!

Hi Terri and all the rest of the gang.  My computer was down for a bit and my husband off from work.  I've booked August with plans galore.  I'm trying to make time fly so i don't lose my mind.  It's amazing I haven't lost it yet after two years of this.  I have an appointment with top cardiologist at Mass General on the 30th of this month.  My stomach is sooo swollen.  I actually wondered to myself if I could be pregnant but I think the hysterectomy probably points more toward the ascites.  LOL!  Anyway, I was no where as bad the last time I saw this guy( a year ago) not that that excuses him for not listening.  Thanks to the advice of all you, if this doesn't pan out, I will be off to Mayo or Cleveland whoever is willing to see me first.  I will get my way in.  Terri-I do have Drs but with the exception of this one cardiologist, the rest of them think they "may have read about constrictive pericarditis once" or they think they know exactly what they're talking about but don't(i.e. looking for symptoms of pericarditis and ignoring those of constrictive pericarditis).  Anyway, I also have a new round of tests in September of Pulmonary function Tests and Echo.  We'll see.  I'm trying to have faith!!!  HAHAHAHA

My girls-they're everything.  My three year old has a head full of blond curls, hazel eyes, fair skin, is a mommy's girl and has a sense of humor way beyond her years.  My 4 year old has long dark wavy hair, bright blue eyes, italian skin like her Daddy, is a daddy's girl and sooo smart and stubborn.  She demanded to be taught how to tie her shoes when she was three and had it mastered in a month, one week shy of her 4th birthday.  I was pushed academically growing up so I don't believe in academics until kindergarten but now she's starting to tell time(on the hour) and is doing addition and subtraction.  I swear I'm not teaching her these things.  Then going back to my 3 year old sweet little blond angel girl-well I'm sure she's just as smart but could care less!!  Completely oblivious!  She can count to six!!!  LOL.  And Mommy and daddy are just as proud.  It's amazing how the personalities shine through.   My  sister and I were a year apart and it took me my whole childhood to find my place with who I am-but not these two!!! 

Mzroeck and Mister-thinking of you.  Nan-Off having fun are we?  Cathy-my computer is going to the "hospital" in two days and will be there for awhile but when it gets back I'll be all over your e-mail (just kidding I won't do that to you.)  Terri- thanks for caring.  Brenda and Andrea-hope you are well.  John & Specky-Where are you?  You still belong. 

Post Edited (havefaith) : 8/10/2005 6:43:36 AM (GMT-6)

Hey Fellow Heart Surgery companians..WOW, we sure are lengthy, I can't believe how many "chapters" we have here...what a great group of people!

 

Hey Ter....missed ya!!  Always think about you!  Mzorek, when is your surgery??  Please let us know, so we can be praying our heads off..PLEASE be sure to ask Dr. Lytle for a private room, so you can have your wife stay with you, it does not cost your insurance more!

 

WELL, I took ten steps back...I had the WORST pain in the world yesterday, and no pain meds would touch it, it was so bad that it left me breathless, sharp stabbing pains in my left side.  SO much so I ended up in my doctor's office this morning, and they did a chest xray, and told me they believed it too be the healing process, they need to do an echo and Mri shortly, you have to wait for 8 weeks after.  The chest xray..OMG, MY HEART IS HUGE>>>very enlarged, which is had been for sometime, but, it was even bigger, they felt like it was enlarged.  The pain has been on and off all day..shooting pains only on my LEFT SIDE...it really is painful and exhausting.  Well, I am off to lick my wounds...and lay down, see ya all soon!  Cathy

Hi everyone!

I'm happy to report that I did not set off any metal detectors at the airports :)  Had a great time...walked and walked and walked and it sure feels great to love walking and not dread it!

Cathy...that does not sound fun!  What did they call it?  Does advil or anything help?  Hope it goes away soon.

HaveFaith...I will be praying for you!  I hope you get answers soon...I remember the big stomach all too well...luckily I wear scrubs to work or I could have just as easily put on maternity clothes at times.

Mister...I can feel my heart beat if I really lay still but not unless I'm looking for it.   I've had a few flutters too but nothing that stuck.  I hope that resolves for you soon!  And when will that fluid go away?  Are you shedding it with the Lasix? 

Have to head to bed...I'm beat from too many nights of living it up :)

Think of you all fondly...Nan

Hi, everyone.

Sorry to hear you've been having so much pain, Cathy!  Hope you feel better soon.

Nan---  So nice to hear that you had a good time.  It does feel good to walk, doesn't it?

RE: your comment--- I don't know if the Lasix is really doing anything.  My weight continues to (and always has) fluctuated a lot.  I can still feel some tightness / discomfort in my chest.  Still some inflammation, I guess.  Interesting that your palpitations were minimal, too.  Mine are *very* noticeable, particularly if I'm laying on my side.  I've been recording them, though, with my event monitor, and the docs say its nothing.  Just gotta give it more time.  Till October at least. 

Havefaith---it sounds like you are able to draw great strength from your children.  Here's to hoping that you feel well again soon.

And Teri---you are the best.  Thanks for checking in on all of us. 

Best wishes,

Mister S.

Hello everyone, it has been a while since I posted in here but I followup with the board on a regular basis.  It is so nice to see how everyone is recovering, albeit with a few bumps in the road.

So, to give an update on my bf, he was doing really well.  Slowly decreasing the steroids, with no serious problems.  He went to Hawaii to visit his family, and right before he left, went down by 10 mg (from 30 to 20).  I told him I wasn't sure if this was a good idea, because it was at 20 mg last time where he was having a reoccurance of the pericarditis (hence the name, recurring pericarditis).  Well, he said his doctors told him it was time to get off these steroids and so he did.  He was fine for 10 days in Hawaii, and he has  been back since last Sunday.  I come home from work yesterday and he says that he started to feel some discomfort in his shoulder -- same as before, though this was quite mild.  Boom.  It is SO frustrating with this thing, to keep having to reface it over and over.

Luckily he had a doctor's appt at UCLA today, with a new doctor for a 3rd opinion.  His regular doctor is out of town for 2 weeks.  But what do you do when the body can't get off the steroids without having a reccurance?  What are the options?  I know most everyone here is dealing with CP, but does anyone have any experience of what options there are?  This is just such an irritating thing to keep having to face.

Thanks everyone, I appreciate any input you have.

Maya

Welcome Maya!

 

I glad to see you back, however, I am sorry to hear all your bf seems to continue to have to go through!!

 

Mister is one of the resident experts in this area, and he's hit on pretty much everything I just spent the last half hour researching for you. lol  (I thank you Mister!) And the Crohn's board is a great suggestion!! :)

 

I did however, find a site that may offer a 2nd medication option - that is, if he's never tried it before?!

http://www.mayoclinic.com/invoke.cfm?objectid=CE3BC2CF-B4C1-4401-8F0F9E0B7C284538&dsection=7

Please, don't stay away so long!

 

Hugs, Teri

Thanks you guys! I appreciate all the input.

Well he went to his appt with the new doctor at UCLA, and she said he's on all the standard stuff... prednisone, colchicine, motrin, etc. And she says that recurrent pericarditis WILL eventually go away, as long as it is not linked to another chronic condition like rheumatoid arthritis, crohn's, lupus, etc. He has been tested again and again for these indications and there is no evidence of another condition. So there IS hope.

Thank god he slept very good last night and is feeling better today, just a hair of discomfort. We are both just hoping that he doesn't have to go up on the steroids again. 20 mg is a good place to be, 10 would be great, and eventually, of course, 0 is the goal. He is feeling positive and cheerful, and isn't that half the battle?

I'm feeling much better as well, of course, and that is definitely as a result of your kind words Teri and Mister. I do appreciate it. Take care and I'll keep you posted on where this adventure takes us! Have a nice weekend.

Maya G,

Yeah, that was also my experience with recurrent pericarditis... it comes and goes... Hawaii, I think the heat did not help either...

I'm checking in around Aug 25 at Cleveland... after preop checks I'll hear the verdict... will let you know...

Won't bring laptop... apparently they have internet stations at the Library.. my faily will report..

Hey guys!

Doing much much better.  Went to the doctor, he said that it is probably spasms from having the nerves and muscles cut.  He did a chest xray, and boy was my heart LARGE!  VERY ENLARGED, he felt it was probably still swollen from the surgery.  The pain has subsided a bit, they UPPED my pain meds, which I was hoping to start going the other way.

Mzorek, YOU won't need YOU LAPTOP...CLEVELAND CLINIC has computers stations on every floor of the hospital and they are set up with the internet.  They have lounges, and they are all set up with computers that is how I was able to email three days after the surgery. Pretty cool.  Boy, I sure will be thinking about you on the 25th, and will be waiting on pins and needles to see how it goes!  IF he decides to operate, be sure to ask for a private room!

Nan, so glad you had a great trip!  I wonder if Cleveland uses a different metal, I went back and checked the book they gave us, and it surely says that alarms will go off.  I wonder if that is old, and they just haven't updated it yet.

Ter, thanks for your warm thoughts..I was having some massive pain, it literally was breathtaking, and would NOT let up.  It lasted about three days, and it has been so much better now.  The incisions are looking great..just a thin pink line.  A bit itchy now, but I guess that is the healing process.  IS there anything you can put on it to make it heal faster/better?   I have to tell you, the best thing about this whole thing is not feeling my heart beat anymore.  Sometimes it hits me in the middle of the night that I don't have heart palputations anymore..what a great feeling that is, as feeling my heart beat was so creepy.  SO far no atrial fib, so, I think it is gone, I am done with the meds, and they said if it should start, it would be once the medication ran out...so far, so good.  Have a great day guys!!!  Cathy

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

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