Pericardiectomy - Part II

Cathy, you know I wish you the best!! Hugs, Teri :)

Hi, everyone. 

I only just discovered this forum a few days ago, and I'm glad I did.  I'm a 26 yr. old male w/ constrictive pericarditis, and I'm heading into surgery on Tuesday, May 31st.  The anticipation is pretty rough, but it will be nice to finally get all of this over with.

One of the things that has been especially interesting to follow (throughout all of the posts, including the original pericardiectomy thread), were the various symptoms & attendant stories that people had.  It really is a great relief to hear about others' experiences.  After reading all these posts, it's clear to me that I've been exceptionally lucky insofar as I've pretty much only had to deal with edema in the legs.  Lately I've had some pressure in my chest, and I think I've been gradually losing my energy, but that's about it.

I was curious about whether Nan and others had felt a sort of uncomfortable sensation just below the right side of the ribs, due to enlargement of the liver?  (My liver enzymes have all been normal---so far---but I'm wondering if it's finally starting to swell.)

Best wishes to everyone,

---J.

Hi J. and Welcome to HealingWell!! 

 

I'm no expert by far in this area, but I've sure learned a lot through the others here!  So I'm glad that you've found us and you're able to perhaps find some solace in what some of the other members have said.

 

You are so very young, do you know what caused your pericarditis?

 

Good luck and best wishes to you on May 31st!!  Please keep us posted, okay?

 

Hugs, Teri

 

Can't spell again...lol

 

Hey Ter,

I have had the flu or something, but have been knocked on my butt..

I went to the heart doc the other day, and I was in atrial fib again, it seems

I am in it more than I am out of it.

they gave me a poweful anti arythmia called Rythmol, and I am now on Coumadin, I am going DOWNHILL fast, they are pretty I worried

but  will be fine.

 

Mister, good luck with your surgery.

how thick is your calcification?  Where are you having surgery?

your liver is affected by this, no doubt..

it looks like you caught it early tho

and you will do great.

please keep us posted.

we will worry about you now

if we don't hear from you..

 

thanks Teri for being here for me....love to you...

Cathy

Pat, Betsy, Teri, Cathy---

Thanks!  You all are terrific.

Re: the liver---it doesn't feel like a balloon or anything like that, it's just that I'm more *aware* of that area, if that makes sense.  It doesn't hurt, and it's only uncomfortable in a minor way, so I guess it's not a huge deal, but I was curious what others' had dealt with in that regard.  I had an abdominal ultrasound back in March, and all my organs were normal-sized.  (And this was a treat---they sent me in for that because they thought there was something wrong w/ my spleen.  In the pre-op blood work for my angiogram, my red blood cell count was a little high, and I wound up having to go to a hematologist, my angiography was delayed, etc.  It turns out that I've got a secondary polycythemia due to the CP---i.e., because of all that backed-up blood, my body feels like it's not getting enough oxygen, and so it's making more red blood cells.  Weird, eh?)

And, yeah, Cathy---I think this was caught relatively quickly for me.  I've been seeing here on the forum that some people have been living with this thing for YEARS, and that's just kind of unbelievable.  I caught some kind of really nasty illness back in October of 2004, and I think this is what caused everything.  I thought it was a flu (albeit a very, very bad flu---complete with sheet-soaking night sweats, chills, body aches, etc.), but I was sick with it for about 6 weeks.  I finally went to the Dr., and she diagnosed sinusitis and bronchitis.  Anyhow, after I got over that, I just didn't feel *right*.  I would be out of breath after walking, like, fifty feet. 

But I recovered from that, or so I thought.  By January, I felt terrific.  Lots of energy, happy, etc.  Then my legs started to swell up.  I waited three weeks in the hope that it would go away, and then I went to the doc and that's when this whole adventure began.

Back to your Q. re: calcification---I don't think I've got any, or if I do, I was never told any measurement.  Given my age, I can't imagine that it's that bad.  My team of docs (4 cardiologists and a surgeon) simply said that the pericardium had thickened, and that it needed to be removed.

Teri---I am in Los Angeles, and will be having surgery at University Hospital, which is the teaching hospital for USC.  My surgeon is Vaughn Starnes, who is among the very best.  (If you google his name, you'll prob. see that he was featured on a Discovery Health channel show called "Super Surgeons."  Needless to say, I'm confident that I'm in good hands.)

And Cathy---my God you are tough.  I've no doubt it takes a lot to hang in there with all your symptoms.  All the best to you.  Your surgery's in a few weeks, no?

Thanks to all,

---J.

Sorry, that's a typo above.  It should read "heart disease" not "heard disease."
Les

J., I'm so glad to hear that you have the confidence in your Dr.!!  That is one of the most important things going into any surgery or procedure-that, and having a really positive attitude, which you seem to have!   

Best Wishes and Good Luck to you-please keep us posted!

Hugs, Teri   

MISTER..

Holy moly macaroni...reading your symptoms blew me away...

When I was 19 years old...I am 42 now...I was living alone, and I broke out with a fever/chills, the worst I had ever experienced in all of my life.  I remember calling my Mother the second day and telling her something was seriously wrong.  I spent literally ten days going to the thermastat turning it ICE COLD when the sweats started and, when the chills started turning the HEAT on full blast...it was a vicious circle, and its all I remember, I didn't even know how many days passed.  My Mother never came, and they have told me, that if it wasn't for my age, it would have killed me.  I was SO sick, I remember it like it was yesterday, EXCEPT, the last eight days of it...I was delierous and all I could do was try to get cool when the fever hit, and when the chills hit, my teeth chattered, I would freeze.  I guess that was the pericarditis.  Now, here I sit so many years later, and ta da...

TEN years ago, I experienced atrial fib, saw a heart doc, he told me my valves were leaking, and that was it.

I have sinced pulled my records and at the bottom the tech from the chest xray wrote:

Possible pericardial calcification, please follow up with a cat scan.

 

My heart doc never mentioned it.  I was just finally diagnosed about three years ago.  Mayo told me if I didn't have surgery, I would be dead in six months, I flew directly to Cleveland, and they said since I was already SEVERE and the mortality rate was high at this stage, that I could wait a year.  They bought me time.  I should have had the surgery then, but hard to second guess then, my symptoms were so minor then.  I have gone downhill so fast the last year, I can't even believe it myself.

My surgery is the 27th of June, I leave for Cleveland on the 20th.  I wish I could go sooner Teri...but, my cardiogist is out of town, and this was the soonest they could do me.  I am having so much breathlessness, that, I wish it was tomorrow, and the waiting is driving me crazy, but, I try not to dwell on it, I am thankful for everyday...  MISTER>..as far as your liver is concerned...ask them how many breadths it is...mine is at three...means if you put three fingers together, that is how swollen it is from the blood backing up......ALSO MY PLATELETS ARE WAY WAY DOWN...70,000.00, they told me my platelets are being affected because of my spleen..my spleen is reacting to my heart failure....

 

If you get the chance Mister, ask them the thickness....they don't like to OFFER that information, but you have a right too know...I bet your not bad, and YOU will do great because you got it so early in the disease...I am between 10 to 18mm, espeically heavy on the right ventricle and the AV groove area.  The pericardium is the lining of your heart, their is fluid, then your actual heart muscle, the myocardium.  My pericardium is adhered to the myocardium, no fluid left.  I am in deep doo doo....so to speak...

 

I dont look sick; and people have a hard time believing it.  I was in a wheel chair in the airport; and a man made a comment that I was trying to "skip my way up the line", I had sun glass's on, and it truly made me cry.  If he only knew I couldn't make it though the airport, and I was totally humliated in that wheel chair, I would have gladly waited in line...

 

Boy, they told me this was so rare, and every week we have a new person...I don't get it....I can't wait to talk to Dr. Klein about this, as he is one of a few pericardial specialist in the country.  I wonder if he knows there are this many cases...The first year I was diagnosed, I FOUND ONE PERSON......and until I found this site...........one other...that was it...WOW.!  I know this is not a great way to have company, but at least I don't feel like such a freak anymore.

 

Teri, hon, don't worry, I will get through this, I am tough, and the symptoms I can live with.  I just don't want to stroke out before I get there.  I am totally taking it easy, and STOPPING myself from doing things, when six months ago, you couldn't stop me.  The constant atrial fib has knocked me on my butt...I thought it might be in my mind, how could the symtoms get this bad so fast....the doctor told me day before yesterday, that my heart is failing, and this is why.

I only have a few weeks left, and away I go......

Good luck to all of you......my prayers are with you all....

YOu all have given me such hope and courage...

your friend

Cathy

nan...where are ya hon?

Betsy...HOW ARE YOU DOING????

LES>..write and let me know how you are doing!!!

LES!!

 

Mister is right....

CP goes MISDIAGNOSED SO MUCH....get this......after I had seen the TOP cardiothorasic SURGEONS at CLEVELAND>>MAYO AND CEDAR SINAI.........I had a cardiogist do an MRI, and he came back, and this was SIX MONTHS ago, and he told me, you do not have a calcified heart...there is no calcification at all.  I about fell on the floor, I was like, you mean to tell me, after all of these places I went too...they are all wrong and you are right, and he insisted he was.  He wasn't.  But, can you imagine had I gone to him first..I would have believed it wasn't this.

Because a lot of techs are not used to seeing this, they dismiss it....and MISTER is so right..it can be misdiangosed for so many other things.  ALL the symptoms you speak of point right to CP.  Why some doctor's will not recognize it, I don't know.  GET ANOTHER OPINION please...

 

I met a guy who had a pericardiectomy two years ago.  He went to the University of Birnigham (sp)

the surgeon told him he had done them before, it would be a piece of cake.  THey told his wife he would be in surgery over eight hours.  After two hours, the surgeon came out and said he was done, he could not remove it.  They put in him the children's cardiac unit, and the doctor NEVER came back in to see him again.  HE found later, they removed VERY little of the calcification, and a year later he had a MRI, all was there, even the small amount he removed had returned.  This man completely lost his faith in the medical community after that, and now he is in the last stages of heart failure; and they say he needs a heart transplant to survive, he is so tramatized, he wont' go.

His wife is beside herself, but he will not go back to ANY doctor.

the moral of this story is, please do not take one hospitals word for anything....had I listened to this guy...he said I had a small bit of PERICARDIAL FAT......no calcification...when, my heart is covered in it...

be careful, and get another opinion please!!  Bless you all, Cathy

Hi Gang: Thanks Mister.

I'm not sure which symptoms can be attributed to the liver failure. I usually start feeling very ill after I've been up for three or four hours. Its a nauseated feeling but without the feeling of needing to vomit (sorry to be so gross). I assure that's related but so far no one has confirmed it.

I think my condition has been difficult to diagnose because the symptoms appeared immediately after a triple bypass operation and have never subsided. They get worse with beta blockers and ace inhibitors because my edema increases substantially. The curious factor is that I can point to the place in my chest that the pressure is coming from. Its always been the same; left of midline between the 3rd and 4th intercostal space. It ranges from moderate to severe and increases with exercise but disappears when I lie on my back or right side. The other symptoms are pretty much classic. When I wake each morning, I feel as healthy as ever. As soon as I stand up, the pressure starts and doesn't cease until I lie down again.

The triple bypass resulted from a well physical. Included in that physical was a stress test. The stress test resulted in a heart cath which resulted in an admission and triple bypass within a week. Prior to that, I never had any symptoms at all. I was an endurance cyclist, rode 6 days a week, often more than a century (100 miles) a day. I had serious complications during the surgery, was bed ridden for four months and have never been the same. Now one medical university has said I have CP, Emory says its questionable and too risky to operate and the medical school in SC says they don't know what it is but don't think its CP. That's three opinions and all different.

sorry to take up so much space, but I get carried away. My heart is with you guys though.

Les

mister...right again........beta blockers and CP do not go together....I have read that over and over...

ALTHO,  have been taking them for ten years....Topral, it was what was keeping the atrial fib in check..

BUT, I do know, that they should not be taken if you have CP< why they keep me on them, I don't know..

okay, as far as feeling sick, I am having massive ULCER ATTACKS the last week...its so bad, I am living on Zantac....i think with the upcoming surgery...has caused this, but I do not ever feel like I am going to throw up...hasn't happened it...HA!  wait til they wheel me into surgery...I will be ready to then!!!

Don't feel bad LEs about the different diagnoses...if I could count the different opinions that I was given, I have surely lost count...it has been insane...that is what has taken me so long to have surgery, one doc would tell me one thing, and the other something different, and on and on....it wore me out, I felt like a dog chasing its tail...

Probably the two worse symptoms i have is the ascites...MASSIVE SWELLING, and the atrial fib....

I am just plain worn out...

They have me on Morphine...400mgs a day....that doesn't help, but I don't take NEAR what they tell me to take...

xanax..that has come in handy, I am sure I having anxiety attacks, I will be watching TV and suddenly I can't breathe, or catch my breath...has to be anxiety...

Les, I find the opposite happens, when I stand up, I do better...when I lay flat, I suffociate...interesting!

guys, let me know how things are going...Cathy

Mister S.

I wanted to wish you the best of luck and let you know that I'll be thinking of you and saying a prayer for a very successful outcome for you!!

Ascites, of course has it's various stages, perhaps, your abdominal swelling just hadn't gotten as far yet-thank goodness!! I don't believe it's gender related. I'm so glad that you're getting this done now and feel that you'll really appreciate the difference afterwards!!

Best wishes and Big Hugs, Teri :)