Pericarditis & Pericardiectomy Part V

Welcome to all new and past members of the "Pericarditis & Pericardiectomy Club" and all their caring friends!!

As you will see this has really become a very popular thread and one where we can all share and offer much needed support to each and every person that enters this arena...

Pericarditis is a rare condition and in the past Part I, II, III, IV and now Part V threads you will find that those that have traveled this path and those to come will find the people here are tremendously open, caring and supportive! 

Welcome!!

Your Moderator,

Teri

I saw my new Dr yesterday.  She had this great idea of a repeat echo and told me the pressure in my head was probably alleriges.  Nan?  Help me here.  I know this is not allergies.  Did any of your Drs ever address this fullness feeling?  What causes it?  Can you describe anything about it?  Was it constant or just on and off?  Did you have other symptoms before it?  And a repeat echo?  Doesn't CP have to be really advanced to show up in an echo?  Are these people wasrting my time?  I have no where to go.  These Drs keep sending me for Pulmonary Function tests and Echos.  Once , I had mild hypokinesis in the right ventricle.  Other than that the echos come out normal.  Maybe, I should just stop this crazy hunt and someday I'll wake up to my old life.  Funny speaking of the aftermaths of surgery, this all started after my hysterectomy.  Last summer I spent the whole summer in one Drs appointment to the next.  Now, I don't even have any Drs left to turn to.  This one specialist deemed my problems autoimmune related and ruled out Constrictive Pericarditis/Restrictive cardiomyopathy(I can't wrap my head around that diagnosis) and wrote in my records that I was mad saying "I can't believe I can't breathe and no one wants to help me."  Anyway, this specialist scared away any chance I had of getting help.  What are the chances something will show up in an echo?  

I can't believe this is part V.  what a great group!!!!!!!!!!!!!!!!!!! 

Here is some more info on pericarditis and the tests that are suggested...

http://www.clevelandclinic.org/heartcenter/

pub/guide/disease/other/pericarditis.htm?index=10515

http://www.nlm.nih.gov/medlineplus/

ency/article/001103.htm

I wish you the very best!!

Hugs, Teri

Wow Brenda, I want to wish you all the luck in the world, but I know you won't need it, as you can see, everyone that has gone to an experienced center has done great.  I am still suffering from the same symptoms...argg, acities..pain...jvd...but they say he "suspects" it will get better, altho, he told me had I come in without a symptom, he still would have operated on me, because of the weight on the right ventricle would have taken my life.  He never could give me a time frame, because they don't know.  One thing that has improved...No crazy heartbeats...wow, what a difference that is not having atrial fib, or just plain arrythmia's.  I have completely enjoyed living without those.

I was sure you all would enjoy that story, altho it was a bit embarrasing.  I know we all have one of those realatives that is painful to talk too, this aunt is living with about ten cats and drives away all human beings.  argggg...gotta love her...

Nan, Teri, I was pretty sure it has to be from the surgery, being that my body has been tramatized, along with my mind...lol..I will tell you one thing...if you start that laugh, RUN for the pillow, I am still hurting today from it.  Still hurts to breathe in...Mister, Nan...Ter...How long on that??  Have a great day guys.  Oh and Mozerk...go to:

http://www.clevelandclinic.org/tour/main.asp?site=Guest_House_Hotel

WE stopped there so many times a day on the shuttle.  My brother and girlfriend stayed there.  They have kitchenette which cuts down on the food bill...and they are very nice..also has a deli in the lobby.  No need for rides..they take you everywhere...we needed "stuff", they took us to the grocery store...walmart...you name it..super cool people.  Tell our Einstein hello when you see him...BUT tell him...no pain like Cathy in ICU!!  No mistakes on the epuderal.  I know you will do great there.  Is he operating under the ribs like mine or the sternum??  Lemme know...Cath

You will be on our "Most Wanted" list this next week...Most Wanted to come back to HealingWell feeling great!!

You've already heard from some of the greatest people here and ones that have already been in your shoes.  So I'll expect to get a great report from you upon your return in a couple of weeks (or as soon as you are able)!

Big Hugs, Teri

xoxoxo

HI ya Teri...you have become such a good friend, hard to imagine life without you now!  I am feeling better by day by day.  Feeling a bit depressed today, I think i am just plain tired of being in the house.  I was feeling pretty itchy around the incision site....also, is it numb feeling around your incision sites??  Does it come back???  Feels weird...

Brenda, all the luck in the world, we will all be praying for you.  I try to remember what I felt like when I woke up from surgery and all I can come with is the night from hell.  My family told me today that I was saying nothing but how bad the pain was...I guess my husband found the surgeon and told him and thus he ordered the epurdeal.  If you can request one before, go for it, I was stupid and declined it from the beginning.  I think had they had more time to get it going perhaps they would not have screwed it up.  But that is behind me, and yes, yes yes, I am happy to be alive and wonder what the future has in store.  It really freaks me out to see how many people have this problem, it seems like we have a new person a week.  So much for theory that this is rare, I just wish I knew what caused it, so that we can prevent it.  If you have a chance to talk to your doctor's, let them know about how many there is of us.  I think the reason know one knew before is there was no where to gage this.  Nowadays, with internet, the second we are diagnosed with something...we hit the internet, and find this haven...especially for this problem..  btw, mozark...the Guesthouse is about $35.00 a night; I don't think you will find anything better, its very nice.  Best wishes Brenda..please let us know as soon as you can.  Teri...your my girl, you always LIFT ME UP!!  love ya Cathy

Best of luck to those with upcoming surgeries.  Cathy, I pray for resolution of your symptoms.

Nan, I am no where close to a Mayo clinic and don't think I qualify for any resources yet.  Interesting though, my echos are always normal but PFTs are abnormal.  What areas of your PFTs were abnormal?  Total lung capacity and DLCOs or just low DLCO? OR what?  if you know?  My PFTS were low DLCOs but lung capaicty was fine so they pointed to a cardiac source-low cardiac output.  My pulse was in the high 90s but lately is in the 80s.  Anyone want to share this info? I'm hoping my symptoms will follow my heart rate and start to improve.  Hey!!  a girl can hope.  Besides, I have beat three fatal diagnoses so anything is possible now.

As always my thoughts are with you.

Brenda, I hope everything goes well with your surgery!!

Thinking of you and sending my best!

Hugs, Teri

Best Wishes to you, Brenda!!

Big Hugs, Teri