Cathy, It sounds to me like you are having anxiety attacks. I didn't have anxiety attacks but did have the shakes a few times the 2 days before surgery. My calcification was an inch think and did need some extra chisseling but the whole surgery was only about 5 hrs. Hope you can relax and have some quality time with your boys before the surgery. I was in ICU for a day and 1/2. Betsy
(((Cathy))) You really are a brave soul and this waiting has definitely taken it's toll on you and your boys!! I think of you often and hope that the A fibs slow down and you are able to get some rest. Do you have anyone who can post on here for you when you are having your surgery? Hugs, Teri :)
"Because he is he and I am I."......E. V. Lucas
"Because he is he and I am I."......E. V. Lucas
"I Hope You Dance".............LeeAnn Womack
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Nan, your input here has been invaluable, so if you choose, I know it would help others as well! :)
Betsy, you have such a wonderful attitude and I'm so very happy that you've come through this and are seemingly raring to go!! :) Take care and keep us updated, your knowledge, too, is very helpful!!
Hugs, Teri :)
"Because he is he and I am I."......E. V. Lucas
Betsy, you have such a wonderful attitude and I'm so very happy that you've come through this and are seemingly raring to go!! :) Take care and keep us updated, your knowledge, too, is very helpful!!
Hugs, Teri :)
"Because he is he and I am I."......E. V. Lucas
"I Hope You Dance".............LeeAnn Womack
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Hi Cathy, Teri, Nan and group.
I'm new to this thread and just signed up tonight. I have recently been diagnosed with constrictive pericarditis and was rejected for surgery by Emory University Hospital because they said it was too risky. Thanks to you guys, especially Cathy, I am looking into the Cleveland Clinic.
In November 2002, I had a triple by-pass after going for a well physical and stress test. I'd never had any symptoms of heart problems and was an endurance cyclist at the time. To make a long story short, I had a triple by-pass at the VA hospital in Charleston. It was one complication after another and on May 4, this year, I was diagnosed with CP.
Are there other good clinics out there other than the Cleveland Clinic? I am in North Carolina and am wondering if the Duke Medical Center has experience in pericardectomies. If anyone knows other clinics, please let me know.
Les
Welcome, Les, to HealingWell!! 
And Wow!~A bypass and then constrictive pericarditis, that's really a lot to go through and to continue to have to deal with!! My heart and best wishes go out to you, Les. There are many here that are more able to answer your questions than I, but I just wanted to let you know how welcomed you are here!!
Please feel free to join in whenever and wherever you'd like!
Hugs, Teri
"Because he is he and I am I."......E. V. Lucas
"Because he is he and I am I."......E. V. Lucas
"I Hope You Dance".............LeeAnn Womack
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Hi everyone...
Les...I think there is a Mayo Clinic in Florida??? Would that be closer for you? I've heard of Constrictive Pericarditis developing after surgery...sorry you have to go through a big surgery again! Keep looking though...there are specialists out there...
Betsy!!!!!!!!!!!!!!!!!!!!!! I was so excited to hear you are doing well...I told 2 people at work that one of my website people made it out of surgery great before I realized that that sounded pretty odd...so I just kept my excitement to myself :) One day at a time...you'll get stronger and stronger. So so glad it's behind you!
Cathy! I can't wait to say the same to you! I will be so happy for you when this is all behind you. Good for you on the school move...keep them close to you! When you call Cleveland...throw in a little "any chance you can get me in earlier???"... be sure to tell them what is happening with your atrial fib and coumadin...they may want to move it up...plane tickets can be rearranged :) There I go again...
As far as the reporter goes...I'd be happy to share my story...I was so relieved to find this site before surgery that if it does the same for others to hear a happy ending...then I'm all for it! Keep me posted on details but focus on YOU first please...take it easy at home...get someone to give you a good foot rub...soak it up just how many people really care for and love you and look forward to this being OVER! I can't wait for that for you. I sure hope you have someone sign on for you when you are in la la land in the hospital because we are going to be wondering!!!!
I think of all of you often...
Nan
Les...I think there is a Mayo Clinic in Florida??? Would that be closer for you? I've heard of Constrictive Pericarditis developing after surgery...sorry you have to go through a big surgery again! Keep looking though...there are specialists out there...
Betsy!!!!!!!!!!!!!!!!!!!!!! I was so excited to hear you are doing well...I told 2 people at work that one of my website people made it out of surgery great before I realized that that sounded pretty odd...so I just kept my excitement to myself :) One day at a time...you'll get stronger and stronger. So so glad it's behind you!
Cathy! I can't wait to say the same to you! I will be so happy for you when this is all behind you. Good for you on the school move...keep them close to you! When you call Cleveland...throw in a little "any chance you can get me in earlier???"... be sure to tell them what is happening with your atrial fib and coumadin...they may want to move it up...plane tickets can be rearranged :) There I go again...
As far as the reporter goes...I'd be happy to share my story...I was so relieved to find this site before surgery that if it does the same for others to hear a happy ending...then I'm all for it! Keep me posted on details but focus on YOU first please...take it easy at home...get someone to give you a good foot rub...soak it up just how many people really care for and love you and look forward to this being OVER! I can't wait for that for you. I sure hope you have someone sign on for you when you are in la la land in the hospital because we are going to be wondering!!!!
I think of all of you often...
Nan
Marlou! Welcome! You are still a spring chicken at 70! How great they will do it all at once! Try not to worry yourself sick. The recovery is a piece of cake...I've said a few times on here that my first C-section was worse, and I still believe it. They are getting so good at heart stuff...it is amazing. I still can't believe they had my heart open wide and I was in the hospital only 5 days! The pain is very manageable and you won't believe how much stronger and better you feel! Hang in there...We'll all be here to support you...
Nan
Nan
Hey Guys!
Love my daily trips to this site, you all make me feel so good, and continue to give me courage to get through this!
LES!! I am sorry to hear you have going through the same thing, I have learned that constrictive pericarditis is common with people with a prior heart surgery, the good news is, it is scar tissue and not calcification from what I understand, which is easier to remove. I too was rejected from Cedar Sinai Medical Center in LA, and was referred to Cleveland. I live in Las Vegas, Nevada, so I am taking quite a trip to go there, but really feel good about Dr. Lytle, his mortality rate on this surgery so far is zero, and I feel confident in him with this surgery, especially with the fact that it is rare and very few doctors have a lot of experience. Please beware of doctors who want to do the surgery, and do not have experience. I had two doctors locally who wanted to have experience, and had not, so they were begging to do my surgery. THEY still call my house! One of the surgeon's told me, "well Cathy, if I have too, I will just roll in the ole heart lung machine", needless to say, I was out of there fast!! I met a husband and wife online two years ago, they went to an inexperienced center and to date he is the only one that has had a bad experience. They quit after two hours in, only removed parts of it, and then never came back in to see him again. BUT, I don't want to worry you...just ASK how many actual pericardiectomys they have done for constrictive pericarditis.., how bad their calcification was and so on.
DId they tell you how thick the scar tissue is?
What symptoms are you having?
Nan, if you can email me...STORRIE20@aol.com, I can give Paul your email address, he is a reporter from The Las Vegas Review Journal, or, I can give you his address...I know from the first article they did on me, people tracked me down from my son's school, they had mentinoned it in the article, and I was surprised how many had no clue what to do. AS was I when this whole thing started. I still remember the doctor telling me I had constrictive pericarditis, and thinking, what the heck is that???? IF we can help one person, or make them feel like they are not alone. After I was told what I had, I came online and typed pericardiectomy, and literally one site came up, i felt lost and alone, it was horrible. Honestly, you have all given me courage to get through this!
Teri you continue to be a blessing here, and keep us all inspired! I will have my laptop with me in Cleveland, and I will show my son's where this site is and they will update you during my surgery. They will be loving things too do, since they will be sitting in a waiting room so many hours! I bought them a portable DVD player, along with my laptop, so they can watch their own movies, and of course all the portable game systems. Hopefully that will keep them occupied.
The atrial fib has finally slowed down, it let up in the middle of the night. I was completely exhaused when it was over. I felt like I ran a marathon myself!
Betsy, I hope you continue to do well, and rapidly recover...
I WISH I could MOVE up surgery.......one of the surgeon's is going out of town, that is why I couldn't get my June 6th date I asked for...so as the days slowly go by, I slowly go quietly insane....lolol...I will make it, I refuse to have it any other way!
God bless and keep on writing!!! I so look forward to all of you!
your friend,
Cathy
Hi Everyone!!
I had a talk with my cardiologist yesterday morning during my appt. My Dr.'s are with the Heart Hospital of Austin, Tx. and they've been super with me!
I was asking him a few questions re pericardiectomies, due to the fact that we seem to have gathered quite a few people here at HealingWell in this area. He told me that it is a rare surgery, that many Dr.'s never see any cases in their entire practicing life. He said he'd only seen, I think 3. So when you speak to Dr.'s and they tell you that they've only done one, or none, I guess that would be why. He said the Heart Hospital's did them as well as many other even small hospitals with great success. I know there are others out there that are maybe reading these posts that perhaps have a similar problem and wonder how they can afford to travel so far to have these procedures done. So I just wanted to bring this up. He did tell me that it can be a lengthy surgery but that it's usually a positive one and the recovery period is fairly short.
Wishing you all the best, Hugs, Teri
"Because he is he and I am I."......E. V. Lucas
"I Hope You Dance".............LeeAnn Womack
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Post Edited (Teri16) : 5/22/2005 7:03:04 PM (GMT-6)
How is everyone doing?? Cathy? Fran? Betsy? Nan? Les? and all the others that I've missed the names? (Please forgive me.) I hope your weekend was a good one!
Hugs, Teri :)
"Because he is he and I am I."......E. V. Lucas
Hugs, Teri :)
"Because he is he and I am I."......E. V. Lucas
"I Hope You Dance".............LeeAnn Womack
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{{{{{{{{{{{TERI}}}}}}}}}}}
many hugs to you...
That was so kind of you to talk to your doctor about pericardiectomys.!!
You are so right about it being a financial hardship on families to travel for surgery, but, when my first article hit the paper on it, I had an organization called MIRACLE FLIGHTS contact me
they assist in paying for airline tickets for paitents and families of patients. They are completely a non profit organization, and rely upon donations. Altho, the airlines in most cases donates the tickets, since most flights are not full anyway.
Check your local area for organizations that are similar, or, if they have a miracle flights, they are all over the country. They are purchasing all of our airline tickets and told me that if I had to go back twenty times, they would pick up the tab on all of them. They are also paying for Ty and Shane and Ned as well, and they too can go back and forth as much as they would like at no cost. Being that we will not have an income for we don't know how long, this has really helped us alot, they are truly a God send!
Also, you are correct Teri about most doctor's going through their entire career and sometimes NOT ever seeing a case of this, but, this is why it is so highly important that you try your best to go to an experienced center, it can truly make the difference between life and death. Everyone I have spoke to that has gone to one, has had outstanding results, and the one that didn't, had horrible results.
Even as big as a hospital as Cedar Sinai Medical Center in LA is, and every movie star in the world goes there for a lot of different reasons because they are such a great hospital would NOT take me, because they had only done four, and referred me to Cleveland and Mayo, they felt themselves they were not experienced enough, and altho we don't like to think about it, but it does carry a high mortality rate, and their are so many complications that can occur. Cleveland told me that if my heart fails during surgery, and it can, they can put me on a heart pump; and directly on a heart transplant list.
I know that Mayo Clinic in Rochester is great, as we know from Nan, and my visit there, and also ST. LUKES in Texas...Dr. Delgotto is a great surgeon, and I have spoke to him many times...also of course Cleveland.
Money is important, but our lives are more important, and if you can at all possible go to a hospital that has dealt with this, please try. Teri is right, it is rare, and its difficult to find surgeons that are experienced...
Thank you Teri, for gathering information from your doctor, you are one of a kind!
Nan, I hope your doing well, and Betsy, I think about you as well.
Les, I recieved your email, and have enjoyed emailing with you....
I have had an okay weekend, still difficult to breathe, and the anxiety is starting to get worse, as the date grows near. I realized today I only have 23 days left.....
I need to see an attorney for a living will, and try to get everything wrapped up.....I hope and pray I breeze through the surgery as Nan and Betsy has...
love to all
Cathy
Cathy, you know I wish you the best!! Hugs, Teri :)
"Because he is he and I am I."......E. V. Lucas
"Because he is he and I am I."......E. V. Lucas
"I Hope You Dance".............LeeAnn Womack
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Where is everyone?! Betsy, hoping you are doing good?! Cathy??? Marylou???
Hugs, Teri :)
"Because he is he and I am I."......E. V. Lucas
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:
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.
Welcome Mister S and my prayers and best wishes are with you for your surgery next week! 
God Bless, Pat
God Bless, Pat
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
"Because he is he and I am I."......E. V. Lucas
"I Hope You Dance".............LeeAnn Womack
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Post Edited (Teri16) : 5/27/2005 10:45:14 PM (GMT-6)
Hi J, I actually went to emergency in the very begininb of my diagnosis because I felt presure under my rib like a ballon was blown up. Actually, about a year before I had the same symtoms but the doctors thought it was a problem with Meds. I had my gall bladder removed and after the surgery the doctor told my daughter that my liver didn't look good. This was probably my first signs though not serious enoigh for more investigation. You know I think that CP showes up differently in each of us. I thank God I have a doctor for a daughter and a general practioner who started putting all the puzzle pieces together. By the way every one, I am two weeks out and totally off pain pills. I saw both my surgeon and my cardiologist yesterday and they are very pleased with my progress. This weekend is our annual family reunion at my 2 acre home and I am so looking forward to it. Everyone said they would only come if I do nothing so I agreed. My 86 yr. old mom is still here and a godsend. How do I ever thank her? Good to talk to you all. Hope you can enjoy the holiday weekend. Betsy
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
Hi to All
Betsy, thank you so much for dropping by and letting us know how great you are doing post op and give your Mom a big hug from me-what a great lady!! I'm very happy to hear that you are doing so well, it's onward and upward for you now! Enjoy your family get-to-together this weekend, and Please stop by whenever you get the chance, you're now in our support corner!
I'm very happy to hear that you are doing so well, it's onward and upward for you now! Enjoy your family get-to-together this weekend, and Please stop by whenever you get the chance, you're now in our support corner!-----------------------------------------------------------
Cathy, I am getting concerned about you-have your Dr.'s in Cleveland been notified of all the above?? Would they consider moving up your date if you are over your virus?! My heart so goes out to you and I pray and hope things start going your way soon, my friend!! Keep in contact with us as often as you are able and I hope you start getting over that flu thing soon!! The A-Fib and then the coumadin go together as they try to prevent any clots from forming-they explained that? What have they told you??
------------------------------------------------------------
J. where are you?? Hope you are doing okay?!
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Nan, I hope you you are doing well? I miss hearing from you!
Wishing each and everyone of you the Best!
Hugs, Teri
"Because he is he and I am I."......E. V. Lucas
"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:
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.