Pericarditis & Pericardiectomy Part V

I just read that you "still can't breathe"..I can't either, and have a hard time taking any type of breaths, why do you think that is so, and what do you think it is caused from?  I would have thought easily a month after surgery I would be able to take a deep breathe, but still can't, and grab for my sides and hold on tight if I go to yawn.  It can't be from the incision, because I don't have that down the middle, so it has to be something internal.  I wonder how long it takes to heal completely.  I know they said something about the incision healing faster, but what was done inside would take longer, the cutting around the heart...ribs so forth..I dont know.  IF anyone knows, please educate me, I also have  bump in my neck where the tube was in...will that go away?  thanks guys....Cathy

btw..NAN, have a great trip..take something with you, that proves you had surgery, JUST IN CASE!

Hi, everyone.

RE: the metal detector.  My doc told me that it totally depends.  Some airports use equipment that's more sensitive, and so there's a chance that you *will* set off the alarm.  The wire that they used on me was made of stainless steel, and I would assume that's what they used on everyone else...  There aren't that many materials that can be left inside the body, right?

Cathy---good to hear that you're doing well!  I was sore like that for quite a while.  It was uncomfortable or downright painful to yawn up until around six or seven weeks, I'd say.  I still have this stiffness / heaviness in my chest, too.  I guess that'll go away eventually.  Oh, and I've been sleeping fine again, too.  It's all just a matter of patience, it seems.

And yeah, vacuuming....  I was specifically told not to do that, along with changing the sheets.  (Kind of odd the things they single out, don't you think?)  Was okay from the beginning for me to do dishes or to cook, though. 

You have a bump *in* your neck?  I wonder if it's a phlebitis type thing...  I had something similar on my left arm, due to the fact that one of the RNs blew my IV over there when he was trying to give me my Torodol.  Anyhow, it took a while for it to go away, but it eventually did.

Best,

Mister

p.s.  Why should we even have to take cards with us through the airports?  Shouldn't our scars be evidence enough?  Just a thought... 

MISTER...thank you so much for the information...I am at the one month point, and probably am expecting too much too soon.  Good to know approx when it will subside...

NAN...thank you as well on the timeline, how long has it been exactly since you had surgery...six months, I thought you were at.  I can't wait til I am where you are!!  I didnt mean to send up any red flags about the airport..sorry, it was in my paperwork, and your right, showing the "zipper" should be enough, (if your a man!!), I don't know much about it, because I didn't ask, but Cleveland gives you this book on what too expect...before, during and after, and that was one of the things it mentioned, as Mister says, there probably aren't a lot of materials they can use.  Just thought I would bring it up since I had read about it, other than that...I know nothing...lol

Teri..you know I would never leave you...btw, let me know when you have a live forum going, I would love to join you..

as ever, Cathy

Cathy,

I wanted to thank you and I just thought I'd let you know that I went back and read your articles that you posted the links for.  In fact, I printed them off.  I thought it may be a great tool for me to help my family understand my perspective without using the first person regarding fears of death.  I see my sister shutter whenever I get a chest pain or take too long of a breath.  My father looked like he might faint when I said something about a right heart cath last summer.  I remember when I was so innocent and those things were foreign to me.  I miss that.  It is so second nature for me to grab my chest or cough the way I do or stop and rest holding on to a wall.  funny, I don't even notice the stares anymore, until after the fact.  Then the other day, my three year old said she couldn't "pick up her toys" because you guessed it she "couldn't breathe".  I try so hard not to say the ouchs, oohs, or ridiculous coughs in front of them but I guess I haven't done enough.  My legs hurt so bad in the morning, it is almost impossible not to vocalize somrthing to my husband but what did my four year old say the other day?????  "Oh!  my legs.  Why do they hurst SO BAD?"  My husband and I looked over at her mostly with amazement but still the typical parents' paranoia.(what if something is wrong with her)  Then she shook her head and said, "I just don't think I can do clean up time today, walking all those stairs."  I swear, I almost never cop out of things either but those two little drama queens will hold on to my worst moments and use them for evil.  If only I could teach these girls to use their powers for good!  LOL.  They really do have the biggest hearts though.  They keep me so happy, my ultimate strength through all of this.  I can't believe the sense of humors on those two. 

Yes, the Neurontin seems to be helping already - what a relief!

I'm so glad to hear you are doing well - it's so good to hear these success stories!

Big Hugs, Teri

xoxoxo

Mrozek, time is sure going by quickly - you seem so very organized with all of this and that's good - it'll make things go more smoothly for you once there! Also, I just wanted to comment on how nice it is that with all you are going through, your compassion for your wife is still shining through! 

You rock!!

Hugs, Teri

This is something that you should get attention from your Dr. about!!  Yes, it seems to sound like SOB (Shortness of breath) to me.

I have it and I get it from several things...one is my angina, asthma, mitral valve regurgitation, when I overdo and my heart has to beat extra hard, I get tired and short of breath and have to rest.  It feels like I just can't get in enough oxygen and sometimes like I just ran the 50-yd. dash!

In your case it could signal a few things that could be serious!  I'm not trying to scare you, but you need to get this checked out by your Dr. ASAP!!

Let me know what happens - the following link shows you the different reasons for SOB and you can click on any of the descriptions.

Hugs, Teri

http://www.mayoclinic.com/search/searchresults.cfm

Hi everyone, sicker than me is my computer.  We have been hijacked and it only works some of the time which is so frustrating to me because I sooooo  need this message board.  Anyway, Cathy your message brought tears to my eyes.  Having kids make everything so much harder.  I have to think of them first and I'm soooooo tired.  But no time for sleep.  Actually, I'm very lucky, my girls sleep 12 hours through the night and my husband helps way more than most.  I would LOVE to e-mail you.  I'm so flattered that you suggested it but I'll wait until they fix my computer hopefully by the end of the month.  I don't think sending anyone a virus(if it's possible) is a great way to start a friendship.  LOL.

 I keep journals for my girls but they're different than yours.  I write down all the funny or cute things they say and do which are sooo many.  Already I look back and read them and I've forgotten what I was sure I would never forget.  I'm not as strong as you yet.  I can't come to terms that there would ever be a chance of me not being here.  That's why I don't talk much about restrictive cardiomyopathy which is still a definite option for me.  I just have to assume it's constrictive because I truly am an optimist.  As far as what to tell my children, I definitely will tell them I have a big owie(that's cute) and that the Drs will fix it but I can't do that until I beilieve it.  I remember when you were struggling about what to tell and allow for your boys, Cathy.  these Drs surrounded me with morbid thoughts and promises of help and then abandoned me for the past year.  My faith in Drs has been shattered.  I have more than a few thoughts to figure out in my own head.  Besides if they are right and I have an autoimmune illness provoking symptoms that can't be treated, then this is now my life and I can't promise my kids I'll get better because I won't.  It just doesn't seem possible.  I'm getting worse too fast.  I feel pressure in my upper right side of my stomach now everyday.  But the far worst is the pressure in my head.  I swear it's going to blow off like in a cartoon one of these days.

Nan, I agree with you on your comment about your breath being cut short at the top.  You said something like that and that is how I would describe my shortness of breath too.  Along with a general feeling of getting just enough but not a comfortable amount.  My oxygen levels are great along with my lung capacity(TLC)  but my cardiac out put is not and my oxygen uptake which has something to do with the heart pumping is only 48%.  Yet they take my oxygen level, read 99% and say, "You're getting enough oxygen."  Okay, then -I get wordy sometimes.  Like I tell my 3 yeard old and 4year old daughters, it's someone elses turn!!!