I just returned from the Medical University of South Carolina in Charleston where I had some additional tests. I was informed I was an "enigma" so I guess this condition is as rare as we all know it is. In my case, I have the cardiac constriction but don't appear to have the percardial calcification normally seen on CT scans. The symtoms appeared within a week of surgery and that was two and half years ago. I have right side heart failure, liver failure, pulmonary effusion and edema but don't seem to have the calcified pericardium. In any event, the saga continues. I have obtained Braunwalds textbook on Heard Disease and at least have some ten dollar words to throw at the doctors. Keep me posted.
Cathy, please stay in touch and let me know when you leave for Cleveland.
It sounds like you're getting good care. Oddly enough, I was also told the exact same thing by my GP: that I was an "enigma." Most of the articles I've read say that CP "represents a diagnostic challenge" because it looks like other things. (E.g., restrictive cardiomyopathy, CHF, sometimes cardiac tamponade, etc.)
Out of curiosity, what symptoms (if any) have you had from your liver failure? By any chance have you (or anyone else on the board) had nausea and/or heartburn? Vomitting?
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
"Because he is he and I am I."......E. V. Lucas
"I Hope You Dance".............LeeAnn Womack
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Les, just out of curiosity... restrictive cardiomyopathy is a diagnosis that is very rare as is constrictive pericarditis-why or what symptoms helped tip them off to the diagnosis that you do have? I am no Dr., but I'm going to give you some more food for thought here...check out this site below, it has plenty more info on all this!
I wish you well, Les, and hope they can offer you some help with this soon!! I've had both left and right heart failure and it's not a pleasant feeling, especially with the swelling and all the rest that can go with it.
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 will write the second you can after surgery okay??? WE will all be watching for you with bated breath...so please please please...write as soon as you can and let us know how you are...we will all be WORRIED SICK!!! Please don't forget us....Cathy
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
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.
That's interesting. I was always troubled by the nausea early in the morning too. At first I figured that it was related to the medication (i.e., the furosemide/lasix), but then, seeing all these postings, I wondered if it's the liver... Now I kind of doubt it and think it was probably just nerves and stress. My cardiologist gave me some sample packs of Prevacid, and they worked really well. I ran out of them though, forgot to ask for more, and now I am a bit nauseous again. Oh well. Just a few more days.
In any case, it really does sound like you know what you're talking about, Les. Those textbooks really help. My boss, who has a family history of heart trouble, lent me his copy of the Mayo Clinic Heart Book, and it was a great help.
And Cathy---thanks for the support. I will be sure to let you know how everything goes.
Speaking of which, I went in for all my pre-op tests today. Nothing special. Everyone seems very confident that I'll get through this extraordinarily well. Chances are that I will not even need blood, nor the heart-lung machine. But, we will see!
Until later,
---J.
P.s., Les---re: beta blockers, if you do indeed have CP, then the beta blockers could be making you very sick indeed. Many people with CP---myself included---have a compensatory tachycardia (my heart rate is constantly around 100 b.p.m.) that shouldn't be messed with. It would be worthwhile to ask your cardiologist.
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!
Sorry to hear that you're so worn out / stressed. I would imagine that the sheer length of time that you've had to deal with all this stuff really doesn't help.
You've mentioned your atrial fibriliation several times, and I'm curious what it's like... It sounds absolutely awful based on what you've said, but could you describe what it feels like? Is it like an espeically powerful palpitation? If so, then I can relate---sort of...
By any chance could the morphine be affecting your liver?
Yeah---the swelling is definitely the worst symptom for me too. (And basically the *only* symptom, luckily enough.) My docs told me that I prob. had ascites and that's what's been causing the nausea / abdominal discomfort. And come to think of it, I do feel sort of bloated... Possibly the massive abdominal swelling you and Nan described is more of a gender-specific thing? I've got edema (and it's the 'pitting' kind---you can poke it and it leaves a dent), and it's from the ribs down, but most obvious in my legs.
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 :)"Because he is he and I am I."......E. V. Lucas
"I Hope You Dance".............LeeAnn Womack
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Cathy, how is that flu bug??-I hope you are feeling better with that?! I know that the A-Fib has got to be wearing!! I just wanted to let you know that I'm thinking of you and always wishing you the best!!
Bunches of Hugs, Teri :)"Because he is he and I am I."......E. V. Lucas
"I Hope You Dance".............LeeAnn Womack
Please allow HealingWell to continue helping others by donating:
What a night ...I haven't slept all night. do you ever feel sheer paniac in the middle of the night...like your trapped, and you can't get out...???
Mister...YOu are being so brave...I have three weeks to go, but I can imagine as it gets closer, I will be freaking out inside, I won't show it because, I won't scare my son's/
The ascites is without a doubt something that happens as the calcification worsens...I used to get it once in a blue moon..then it progressed, and now its everyday. I feel like someone is sitting on my chest...'
Teri, thanks for the good wishes...the flu is over, but the atrial FIB is INSANE....my heart beats so fast MY SHIRT MOVES, you can see it....it feels like a rush of blood to my head, and makes me a nervous wreck. I just take a xanax, becasue stressing over it, doesn't help it...the new anti arythimia meds they gave me have helped...no doubt. BUT, to show you how fast I am going downhill...I could vacumn my 4500 sq foot house two months ago, and now i can't even make a bed without getting so winded, I can't stand it...THE ULCER is so out of hand right now.
The morphine is not affecting the liver, we checked on that. I get SHARP, HOT JAPING pains in the heart, and it will ache for hours if I don't take the pain meds. I HATE THEM, and take as little as possible...but if I wait until the pain gets too bad, it takes forever to get it to stop.
Mister, did you ever find out the thickness of your pericardium?
love...peace and Joy to all of you....God is watching and protecting us all...
Cathy, I've had so much done in the past years...when I went to have my 3rd stent and my artery ruptured it was an emergency bypass so we were all sort of caught off guard. But I can tell you that through the years, I was always honest and never lied to my kids, so while they might have been young, they sort of understood that these were things that needed to be done to help in the long run to try and keep me with them all a little longer. And being young, they never really knew what to expect, I always have tried to maintain a very positive attitude even with myself...just keep being honest with your sons and let them know just how very much you love them and how you'll need their help a bit when you come through with all of this!! They'll be able to handle everything much better than you realize.
Do you have other family that will be there?? I probably have asked you about this already...That, too will help them. Is any family near by now?? Have they continued to do things with their friends? Sometimes a bit of normalcy is a big help.
In 3 weeks you'll look back and think of all of these conversations and wonder how it went by so quickly.
(((Cathy))), my heart is with you!!! Hugs, Teri :)"Because he is he and I am I."......E. V. Lucas
"I Hope You Dance".............LeeAnn Womack
Please allow HealingWell to continue helping others by donating:
Have you ever had trouble with scar tissue, or skin growing around the stents? rMy stepfatheir had a recent heart attack, no heart damage, but it was due to clogged arteries...after the surgery..bout eix months after, he was feeling sick again, and they said that scar tissue/skin was growing around the stents and they had to go in again and use radiation. HE is still very sick and not getting better...whadda ya think?
the boys had a sleepover last night....its ten in the morning, and they still have not been to bed yet
either...they are playing clue now, and I suspect they should crash any minute. WE have maintained normacly...except for me pulling them out of school, which they are thrilled about!
DO I tell my son's ahead of time that I could die in this surgery? In the journals, I wrote to them; and gave them advice for the future etc. but they are not allowed to read unless the worst happens..Teri, did you tell your son's the surgery was dangerous? Going to the surgery is of course my husband, both boys...my brother from Seattle, a friend is flying to Cleveland from perioa ILL, and another friend from hanford CA...so, huge support systems, oh, and my mother is going again...uggg, I told you she tried to commit suicide last year, and if anything good came out of that, the boys saw her on life support, and respirators..etc, and that might be good, as they won't freak when they see me on that...
DOES ANYONE KNOW how big the TUBE is that comes out of the Jugular vein ? How long does it stay in? And how many drainage tubes, and how long on them as well. Will they keep me toasted until those all come out? I hope I have NOT built up a resistance to morphine, or the pain meds won't be helping me...uggg..
Teri, I can't believe how much you have gone though in the last few years...I bet it seemed like it would never end for you...I do imagine everything will be a piece of cake after going through this. I will surely be glad when I am talking to you on the other side...thanks again for being such a great friend, you are such a good person.
Thanks, Teri---you are the absolute best. Honestly, how would this site even be possible without you? You are a rock!
Cathy,
Yes---my surgery is Tuesday morning, at 7:30. I'm having it done at University Hospital, which is just east of downtown L.A. My surgeon is Vaughn Starnes, who is notable for, among other things, doing Arnold Schwarzenegger's valve replacement surgery in 1997 or so. I've heard nothing but good things about him (Starnes).
about the pericardial thickness---I don't know. I asked the resident that I spoke with on Friday, but it would have taken him forever to go through the big binder of materials on my various tests and so forth. (Speaking of tests, has anybody else here had a transesophageal echocardiogram?) No biggie. They can tell me once it's out!
As far as that main line in your jugular goes, I asked the resident about that too, and he said they remove it as soon as possible. The whole point of that tube is to allow them to give you blood VERY rapidly (the vein in your arm, from your IV, is just too small), and so I would assume that they take it out once they're sure that they don't need to give you fluids in a hurry. The same goes for the catheter leading to your bladder, and the chest tubes (hemavacs, I think they're called)---they get pulled ASAP. And he told me that I would likely have three chest tubes. They come out as soon as your lungs are dry enough. I'll be sure to let you know how all of this played out with me once I'm back.
How am I staying calm?? Well, part of it is just me, I guess. Just how I am, etc. Another aspect is the fact that I've got a young wife (we've been married almost a year---our Paper Anniversary will be on July 16th) for whom this has been extremely difficult, and I need to take care of her. I guess this is akin to the way you deal with your boys.
My mother and my maternal grandparents will be driving down for the surgery tomorrow. On the one hand, they've been very supportive and good to me about all of this, and on the other, they have occasionally been the source of major stress for me. E.g., on my birthday, my grandparents kept calling and leaving messages, but I didn't pick up b/c I knew they would bring up medical stuff, which I just didn't feel like dealing with. Finally, I gave up and answered after about the fifth call. Sure enough, the first question they asked was, "How's your edema?"
It has been this big balancing act, with me trying to not feel like a jerk and an ingrate, and trying to keep my sanity intact. But... C'est la vie!
