Pericarditis & Pericardiectomy...Part VI

[Teri16]

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

[Teri16]

Cathy, Mister, Mrozek, Nan, havefaith and everyone else - where are you?! Wishing and Hoping that you all are okay!!

Hugs, Teri :)
xoxoxo

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"Because he is he and I am I."......E. V. Lucas

[Mrozek]

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 !!

[Teri16]

Mrozek, I'm glad your spaceship landed here okay! lol  I was wondering what happened to you and the other part of the gang!?  Your 'consultation', or surgery is coming up pretty darn quick isn't it?  Please keep me posted on that!

[havefaith]

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. 

[Teri16]

havefaith, it is great to hear from you!! - it's also wonderful to hear that sense of humor shining through!

[STORRIE]

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!

[Teri16]

Cathy, I am so glad to hear from you!!  I was beginning to wonder where you all went?! Though, this new pain of yours, doesn't sound good.  Did it just start up?, or has it been there and gotten worse?  Any shortness of breath with this?  Did they give you something for it?  I really hope you are feeling better soon!!!  Please take care of yourself.

[Nan2]

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

[Teri16]

Nan, I'm happy to hear that you enjoyed yourself! - and didn't set off any metal detectors! lol

[Mister_S]

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.

 

[Teri16]

Mister, one thing that I've noticed is that since my bypass, whenever I lay on my left side I feel palpitations - try laying on the right side - it helps!  I believe that it's mainly due to the nerves healing after the trauma that your body went through.  Hope this helps some...Hugs, Teri

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"Because he is he and I am I."......E. V. Lucas

[Maya_G]

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

[Mister_S]

Hey, Maya.  Glad to hear from you again, even though that's bum news about your BF. 

RE: your question, it's worth keeping in mind that Constrictive Pericarditis has a clear, physiological set of signs: that is, the heart is being squeezed by the pericardium, and sometimes by calcium deposits as well, thus resulting in symptoms of heart failure (edema, ascites, jugular vein distension, etc.) 

I believe you said that your boyfriend has something different though, right?  Recurrent, or Chronic Pericarditis?  Either way, my understanding is that the standard treatment for Constrictive Pericarditis is surgical pericardiectomy.  Again, though, you've said that your BF has something different....  Regardless, I wonder if he might ask his doctor if surgery is an option.  In any case, I hope you get some answers soon.  (He's had the automatic, standard tests, right?  I.e., chest x-ray and EKG?) 

I get some of the similar symptoms still---tightness in the chest and shortness of breath---but mine is due to pleural effusion. 

Also, you might want to head over to the Crohn's Disease message board.  The people over there have a LOT of experience with prednisone, and I'm sure they'd be able to share their knowledge of it with you.

Best wishes,

Mister S.

ps.  Teri---oddly enough, my heartbeat is more obvious when I lay on my right side, exactly the opposite of what you experience.  Weird, eh?

[Teri16]

Welcome Maya!

[Teri16]

Cathy, I hope you are doing better today?!  Check in and let us know what's happening! :)

[Maya_G]

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.

[Teri16]

WooHoo and Best Wishes to you both, Maya!! - I hope he does wean off that Prednisone real soon!

[Mrozek]

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..

[Nan2]

Good luck Mrozek!!!! I'll be thinking of you and sending you good vibes!

Maya...hope your bf feels relief soon...what a journey!

Mister, as always, great to read your input...

Cathy...how you doing????

Teri...thank you!

Have to run! Nan